tag:blogger.com,1999:blog-83783322723370296212024-03-05T02:34:34.645-06:00Just My Honest OpinionTina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-8378332272337029621.post-58867725985324652462018-08-18T13:19:00.001-05:002018-11-22T20:51:28.196-06:00'Post-exertional malaise' - Does It Need a New Name?<br />
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Yes, another post about nomenclature. Seems my having this disease, which I'll call SEID, systemic exertion intolerance disease, is appropriate since there are so many problems in communicating about it and I am a communications specialist, due to interest and talent and skill.<br />
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So, let's take on another term: "post-exertional malaise," aka "PEM."<br />
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I'm not the only one seeing problems with this term. Donna Pearson, a patient advocate, said at this summer's Chronic Fatigue Syndrome Advisory Committee meeting that the CDC website described PEM as needing to rest in the car after going to the store, too tired to drive home. She astutely pointed out that our disease has both stamina problems and PEM, but they are not the same. She said disease experts can be sought to confirm this, but in her case, what has been described as PEM is delayed from the triggering activity, most of the time ~ 24 hours. She pointed out that since PEM is a distinctive symptom for our disease, it needs to have a clear and accurate description on the CDC website.<br />
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Dr. Lucinda Bateman, who also sits on that committee and has treated many patients, agreed that PEM is a delayed effect, 24 or 48 hours later, although getting tired during the activity also occurs. She said that since the malaise is delayed, it's important for patients to learn to pace their activities. And so resting when you're tired does not help in managing PEM. "Its important maybe to recognize both," she said, "But the idea about PEM that distinguishes it from other illnesses is the delayed emergence of relapse symptoms." <br />
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(<a href="https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2018-06-20/transcripts-day-2.html" target="_blank">transcription here</a> and <a href="https://www.hhs.gov/sites/default/files/lg/2018-06-21-cfsac-meeting-audio-day-2.mp3" target="_blank">audio recording here</a>)<br />
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Pearson said that she is now seeing the "PEM" term being applied to post-exertion fatigue. And while fatigue is part of the malaise, it is not the same as malaise. She said it's used to describe the fatigue that MS patients get. She said maybe we have to come up with another term.<br />
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Pearson is not the first to question this term. Just earlier this spring, in the <i>Solve ME/CFS Chronicle</i>, Pete Hanauer <a href="http://issuu.com/solvemecfsinitiative/docs/chronicle_050918_epub?e=17941417/61119520" target="_blank">wrote an opinion piece</a> on this topic. Like me, he has an interest in communications because of his past-illness life as a law book editor. He recommended we call it "post-exertional disability." He said the definitions of "malaise" focus on feelings instead of effects and may be associated with a mental condition.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidGAzV7DMnPXCyb3E5RXiNBbV0P2tsREWC5PyZ0QDEL1NngB4Kx6ztRcpf_JQeot_27xPMZuo_Ti9xSte8jwnjVKBKRmeaWKHmpy-xCYqdg6NqzR1Oj39gzbo3CaTy0mHGxsdZPz2R_jX9/s1600/van+Ness+slide+on+PEM.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="472" data-original-width="670" height="281" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidGAzV7DMnPXCyb3E5RXiNBbV0P2tsREWC5PyZ0QDEL1NngB4Kx6ztRcpf_JQeot_27xPMZuo_Ti9xSte8jwnjVKBKRmeaWKHmpy-xCYqdg6NqzR1Oj39gzbo3CaTy0mHGxsdZPz2R_jX9/s400/van+Ness+slide+on+PEM.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Slide from the VanNess presentation.</td></tr>
</tbody></table>
And a couple of years ago, Mark Van Ness, PhD, gave a presentation where <a href="https://youtu.be/q_cnva7zyKM?t=11m15s" target="_blank">he said he prefers the term "post-exertion amplification of symptoms."</a> In the presentation, he said that the world has a different idea of the term "post-exertional malaise" (while he showed a slide of an exhausted athlete).<br />
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In contrast, <a href="https://youtu.be/q_cnva7zyKM?t=27m22s" target="_blank">he said about our disease</a>, "We're talking about post-exertional malaise that lasts longer than 24 hours and is not just fatigue: light-headedness, breathing problems, muscle pains . . ."<br />
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This is not the first time this topic has come up. You can find discussion forum posts from years ago raising this issue.<br />
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So, here's what I think about it (as the blog says, this is just my honest opinion, but it comes from a perspective of using terms to communicate effectively.):<br />
<br />
The term “post-exertional malaise” is inadequate and misleading in describing this hallmark symptom of SEID:<br />
<br />
<b>--</b> "<b>post</b>” only indicates order in relation to the exertion. It does not indicate cause and effect and doesn’t say how long after. Is it an hour after or a week after or days after? If it is within a day after exertion, well that’s normal, not an indication of disease.<br />
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<b>-- </b>“<b>exertion</b>” (as base word for “exertional”) is understood by common people to be lifting heavy weights or running a marathon, maybe trying to open a jar with a tight seal. That’s not the exertion that precipitates this symptom for us. In SEID, it can be simply bathing, getting dressed, driving to a lunch then driving home. That everyday non-exertion activity to the general public is enough to cause the symptom for us. It is misleading to use “exertion” because people will think the symptom only comes to us if we exert ourselves as they understand exertion.<br />
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Also, when describing the chronic fatigue in SEID, we often see “and not caused by exertion.” So, this is contradicting. Does exertion cause the fatigue (as part of “PEM”) or does it not?<br />
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-- “<b>malaise</b>” does have one of its definitions fit this symptom:<br />
<ul>
<li>Mirriam: 1. an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness ex. <i>An infected person will feel a general malaise.</i> 2. a vague sense of mental or moral ill-being ex. <i>a malaise of cynicism and despair</i> </li>
<li>Cambridge: a general feeling of bad health or lack of energy in a person, group, or society. ex. <i>Many think there’s a growing moral malaise in society. </i></li>
<li>Dictionary.com: 1. a condition of general bodily weakness or discomfort, often marking the onset of a disease. 2. a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort. </li>
</ul>
Note that each of these definitions for “malaise” do include “feeling of debility,” “lack of health indicative of onset of illness,” “general feeling of bad health,” “bodily weakness . . . marking onset of a disease.” While somewhat vague, this does indicate the medical nature of the symptom and it being experienced as part of sickness.<br />
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The origin of the word is French (mid-1700s), “mal” meaning bad; “aise” meaning ease. So the root means bad ease.<br />
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But the word is not specific enough, nor does it express the severity of the symptom as most with SEID experience it. Also, it has been hijacked to non-medical use, which dilutes its original meaning to one that is actually misleading to its original meaning. The non-medical use is included in the above definitions of “vague sense of mental or moral ill-being,” “general . . . lack of energy in a group or society,” “vague or unfocused feeling of mental uneasiness, lethargy, or discomfort.” Since this secondary definition has a broader use, it is the one that most people understand for this word because it is used more. So in common use, the original medical meaning has been overshadowed by this broader, not medical, less-serious meaning.<br />
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To show what the public thinks of the meaning of the word, I did a Google search for the word “malaise” in the news. Here are the results:<br />
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Notice that 5 of these top 6 news items using the word "malaise" are using it to mean lack of interest, an attitude, or behavior of either individuals, society or a group. This gives the indication that malaise is something that can be changed by thinking differently or getting some boost.<br />
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Because its common use is broader, we’re seeing that broader use creep into medical use for other diseases, such as depression and MS. In depression, it’s lack of motivation and lack of pleasure. In MS, it’s fatigue.<br />
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But, for SEID, the symptom includes debilitating fatigue, brain fog, weakness, body aches, headache, nausea, etc. The number and severity of these varying. These are specific sickness (medical) symptoms, not vague and not just fatigue. Because of its use, the word “malaise” is now not specific enough to describe these specific sickness symptoms we experience.<br />
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Effective communication means not just using words correctly, but it means using words that correctly convey the meaning of what you are talking about. So to communicate effectively, you must use words according to the understanding of the hearer’s (or reader’s) understanding of the word, and not just know one of its definitions is accurate. And, words change meaning over time.<br />
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So, taking the attitude of “the word does include that meaning we are trying to convey” does not mean that is the meaning the hearer will get from the use of that word, especially if the most common use of the word is different than the meaning you are trying to convey.<br />
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If we use “malaise” and people think we mean “lack of interest,” then we have not communicated the symptom of SEID.<br />
<br />
<h3 style="text-align: center;">
<b>Other Proposed Terms </b></h3>
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<span style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;">The inadequacy and misleading nature of the term “post-exertional malaise” has caused some to suggest other terms for the hallmark symptom in SEID:</span></span><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;">Post-exertional neuro-immune exhaustion (PENE) </span></b><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">This term was a proposed in a diagnostic
criteria.<span style="mso-list: Ignore;"> </span></span><br />
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"></span></span></span><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">1. “post” indicates sequence, not cause
and effect. (See above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">2. "</span><span style="font-size: 12.0pt; line-height: 107%;">exertional”<span style="mso-spacerun: yes;"> </span>indicates extreme activity in common use and
contradicts the description that SEID fatigue is not caused by exertion. (See
above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%;">3. “neuro-immune” does indicate medical, but puts a cause to the symptom that is not proven (latest studies indicating more metabolic / cellular energy systemdefects), and it’s likely not immune exhaustion but immune over activity that leads to the symptoms.</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%;">4. “exhaustion,” if applied to the “neuro-immune” could have some accuracy, except as noted in 3. above. But if understood to apply to the person’s experience, it is still not adequate enough to describe sickness symptoms. It’s focusing on fatigue, which is only one of the sickness symptoms. Therefore, the term is either not inclusive enough or can be misunderstood.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;">P</span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;">ost-exertional debility (PED)</span></b><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;"> (As recommended in Pete Hanauer’s commentary in
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<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"></span></span></span><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">1. “post” indicates sequence, not cause
and effect. (See above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">2. "</span><span style="font-size: 12.0pt; line-height: 107%;">exertional”<span style="mso-spacerun: yes;"> </span>indicates extreme activity in common use and
contradicts the description that SEID fatigue is not caused by exertion. (See
above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%;">3.
“debility” indicates lack of ability
to function. While correct, it does not say why the person is unable. Did they
break their leg? Have they become depressed? Is it congestive heart problems?
This term does not indicate the sickness symptoms, which is the case in SEID.
So, it is not specific enough and does not communicate the experience. It’s the
result on the body’s abilities, not the experience or feeling or symptom in the
body.</span></div>
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</div>
<div class="MsoListParagraph" style="margin-left: .25in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%;"></span><span style="font-size: 12.0pt; line-height: 107%;"></span><span style="font-size: 12.0pt; line-height: 107%;"></span><span style="font-size: 12.0pt; line-height: 107%;"></span><span style="font-size: 12.0pt; line-height: 107%;"></span><span style="font-size: 12.0pt; line-height: 107%;">
</span></div>
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;">P</span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;">ost-exertion amplification of symptoms (PEAS) </span></b><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;">(As recommended by Mark VanNess, PhD.) </span><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;"></span><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"></span></span><br />
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"></span></span></span><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">1. “post” indicates sequence, not cause
and effect. (See above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">2. "</span><span style="font-size: 12.0pt; line-height: 107%;">exertion”<span style="mso-spacerun: yes;"> </span>indicates extreme activity in common use and
contradicts the description that SEID fatigue is not caused by exertion. (See
above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">3.
“<span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"></span></span></span><span style="font-size: 12.0pt; line-height: 107%;">amplification” indicates getting more
or getting bigger or stronger and does indicate an effect of the exertion. This
may be ok if one assumes the pre-existence of the symptoms in a milder form
before the exertion. However, for some, there are no symptoms for a few hours
or even only mild fatigue for a few days, then the activity causes sickness
symptoms that were not happening before: headache, nausea, etc. It's not that they are more or stronger, it's that they come on from the "exertion."</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">4.<span style="mso-list: Ignore;"> "<span style="font: 7.0pt "Times New Roman";"></span></span></span><span style="font-size: 12.0pt; line-height: 107%;">symptoms” does not say what kind of
symptoms. Is it a heart murmur? Is it forgetfulness? Is it itching? This is not
specific enough to describe the experience in SEID.</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%;">
</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
</div>
<br />
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;">P</span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;">ost-exertional relapse (PER)</span></b><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;"> </span><br />
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">1. “post” indicates sequence, not cause
and effect. (See above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">2. "</span><span style="font-size: 12.0pt; line-height: 107%;">exertional”<span style="mso-spacerun: yes;"> </span>indicates extreme activity in common use and
contradicts the description that SEID fatigue is not caused by exertion. (See
above)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">3.
“</span><span style="font-size: 12.0pt; line-height: 107%;">relapse” indicates a deterioration after some improvement. While this seems accurate, it does not describe the experience. Is it a relapse in their knee pain? Is it a relapse in their ability to remember things? So it still is not specific enough to communicate what type of symptoms the person is experiencing. </span><br />
<span style="font-size: 12.0pt; line-height: 107%;"> </span><br />
<span style="font-size: 12.0pt; line-height: 107%;">And, this word "relapse" has an overall indication that the person is healthy for a period then sickness returns. That is not the case with SEID. The person continues to have some symptoms, but then an activity causes a particular set of symptoms that are not experienced when having not done the activity. Memory problems, lack of stamina, insomnia, orthostatic intolerance, temperature sensitivity, etc. are common most all the time for SEID patients. But if they do an activity beyond what their body can tolerate and keep homeostasis, they get these other sickness symptoms, the malaise. So they aren’t healthy then relapse. So this term could be misleading.</span></div>
<br />
<h3 style="text-align: center;">
<b>Two Better Terms (IMHO)</b></h3>
<span style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;">In searching for the right terminology to communicate this symptom experience, I found there is no perfect and succinct term. So while many find “PEM” not good, it may be hard to get a consensus on what the appropriate term should be. Of course, this is true about the disease itself. </span></span><br />
<span style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;"><br />When “SEID” was recommended, <a href="http://mecfsfromme.blogspot.com/2015/02/the-new-name-three-out-of-four-aint.html" target="_blank">I wrote a blog about it</a>, including its inadequacies. However, it is, in my view, better than both “ME” and “CFS.” We need to stop letting wanting the perfect to stand in the way of choosing what’s better for now. If we wait for perfect terminology, we will be waiting for possibly another decade or so while the terrible terminology stays and does harm. The options now are better or status quo. We don't have the option of perfect. And the status quo, in both the terminology for the disease and its hallmark symptom, is harming and miscommunicating. </span></span><br />
<span style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;"><br />Therefore, I prefer the following as best options for striking a balance between specific-enough and broad-enough and conveying this symptom experience with commonly used terminology:</span></span><br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: "calibri" , "sans-serif";">Activity-induced sickness symptoms</span></span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;"> (AISS) (This is my preferred)</span></b><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;"> </span><br />
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">1. “activity” is better than “exertion” because the most common trigger is what most people think of as just activity, such as running errands, sweeping the floor, taking a short walk. Although not all activity triggers the symptoms in all patients (depending on the severity), it is a better term for doctors and the public to understand that it can be something they do not think of as exertion that is the trigger. </span><br />
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">This could lead to doctors giving better advice. Rather than saying, “Just don’t exert yourself,” which to a person who just became ill means to not run or lift weights, the doctor would more likely say, “Limit your activity by time and type.” </span><br />
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Also, since the symptom is delayed, the person doesn’t realize at the time that they actually are exerting themselves. It doesn’t feel like exertion. So using the word “activity” can better describe what the trigger is. They know it’s activity, not just what they perceive as exertion.</span><br />
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Adding an adjective to say what level of activity is the trigger will not be broad enough since the level of activity that triggers the symptoms is different to each patient. </span><br />
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Activity is not the only trigger of these symptoms (infections and stressors—both physical and emotion or psychological</span><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">—</span>are, too), but on a day-to-day basis, the trigger is almost always activity and it's the one that the patient has more control over. So if keeping it short is important, “activity” by itself catches most of what the doctors and patients need to know for their day-to-day management of the disease.</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">2. "</span><span style="font-size: 12.0pt; line-height: 107%;">induced”<span style="mso-spacerun: yes;"> </span>indicates indicates the activity is the cause, the trigger, which is more descriptive and specific than “post”</span><br />
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">3. "</span><span style="font-size: 12.0pt; line-height: 107%;">sickness symptoms” is a common way to refer to the original, medical meaning of the word “malaise.” It will keep to the medical connotation instead of the attitude or behavior connotation that “malaise” has in its broader use. Most people, when they feel malaise, describe it as feeling sick, like they are coming down with something. SEID patients describe it as feeling like they have the flu or like they are coming down with the flu. This can convey the sickness symptoms of debilitating fatigue, brain fog, body aches, headache, nausea, etc. that we experience without having to list them all. In saying “sickness symptoms,” people will know its medical and have an idea of what the symptoms are because they know what it feels like to be sick.<span style="mso-spacerun: yes;"> </span></span><br />
<br />
<span style="font-size: 12.0pt; line-height: 107%;"><span style="mso-spacerun: yes;">It’s true that in the strictest view, sickness symptoms can mean other than malaise, but in most common use, people know what is meant by “I’m feeling sick.” They know that’s not an attitude or lack of motivation.</span></span></div>
<br />
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 12.0pt; line-height: 107%;"><span style="font-family: "calibri" , "sans-serif";">Activity- or stressor-induced sickness symptoms</span></span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;"> (ASISS)</span></b><span style="font-family: "calibri" , "sans-serif"; font-size: 12.0pt; line-height: 107%;"> </span><br />
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">1.
“activity or stressor” includes another trigger, the physical or mental/emotional stressors, such as infections, extreme temperature exposure, some foods, etc. But adding this word makes the term more difficult to write or say (longer), and thus will likely be shortened anyway. And “stressor” in common use indicates more the psychological instead of biological. So it could mislead. Adding more adjectives to say mental or emotional or biological is just making it more awkward and longer, which is contrary to the purpose of a label, finding a few words to communicate.</span><br />
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">2. "</span><span style="font-size: 12.0pt; line-height: 107%;">induced”<span style="mso-spacerun: yes;"> </span>indicates the activity is the cause, the trigger. (See above.)</span></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<br />
<span style="font-size: 12.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">3. "</span><span style="font-size: 12.0pt; line-height: 107%;">sickness
symptoms” is a common way to refer to the original, medical meaning of
the word “malaise.” (See above.)</span></div>
<br />
Missing in all these terms is the delayed onset in relation to the activity / stressor. While it can come on a person while they are in the activity, if they have been in the activity for a longer period or been in the triggering activity for more than one day, it is more common for patients to have the onset of the symptoms 24-72 hours after the activity.<br />
<br />
One way to convey that is to include the word “delayed.” It could be “<b>activity-induced delayed sickness symptoms</b>” (AIDSS). Well, that won’t work. It's too close to "AIDS." Or “<b>delayed activity-induced sickness symptoms</b>” (DAISS). The only issue with the latter is whether the “delayed” could be misconstrued to modify “activity” instead of “symptoms.” Is the activity delayed or symptoms delayed? Maybe adding a comma will help: “delayed, activity-induced sickness symptoms” (DAISS).<br />
<br />
Another issue is that “delayed” does not say how long delayed, which means it could be hours later or even a week later, both of which are not the most common onset time. But it does help to distinguish the experience from that commonly experienced by marathon runners, which is most often that evening or the next morning. The delayed part of it is a key to the mechanism involved in this disease because no other disease has this kind of delay in relation to the triggering activity / stressor. And it can help patients to understand it’s not tired from activity, which is what they would expect. It’s sickness a day or days later. And this is so contrary from what healthy people experience from their activity or exertion that it helps in diagnosis. One question could be asked:<br />
<blockquote class="tr_bq">
“If you were to rest over the weekend, and you returned to work or other activity Monday and continue the rest of the week, when do you usually feel the fatigue and brain fog and body aches return?"</blockquote>
Many patients at first do not connect the cause of their sickness symptoms to the activity because it is days later. So having this delay as part of the label can help patients (and doctors) to make the connection to what is triggering the debilitating symptom and thus identify this as the unique symptom of SEID.<br />
<br />
Adding “delayed” gets us back to a longer label. Using the initials could help that. But it will for a long time need to be written in long form. It could be that the delayed part is communicated in a subsequent sentence or paragraph describing the symptom. But that fails to use the quick label to make the distinguishing aspect of it being delayed.<br />
<br />
So the choice here is to having a quicker, easier to say and include in typed text, that includes this aspect of the symptom, or miss it in the label and emphasize it in any description. Each choice is not perfect. <br />
<br />
What do you think?Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com2tag:blogger.com,1999:blog-8378332272337029621.post-35513251261121540292018-07-21T11:06:00.001-05:002021-08-22T12:58:01.105-05:00Lessons Learned about Death in America<!--[if gte mso 9]><xml>
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We go through stages in life, ending in death. We see more
sunrises and more sunsets, and the years behind us increase while the years in
front of us decrease. Without our trying or ability to stop it, following a
natural course, the experience of death becomes gradually more intimate until
it brings the end to our own life. </div>
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<br /></div>
<div class="MsoNormal">
In my case, the first was my great aunt, when I was about 9,
who died from suicide. Although I went to the funeral, my youth and weather
prevented me from getting a full funeral experience. It was a sunny day and my
younger sister and I had matching made-by-hand green flowery pant suits with a
halter top (think 1970s). I mostly played and giggled during the day, except
after the funeral. Then a heaviness of heart, a cloud, came over me as I walked
up the steps of my great-grandmother’s house.</div>
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<br /></div>
<div class="MsoNormal">
As time passed, the deaths came closer: my aunt’s close
friend who died in a motorcycle accident, my grandmother’s close friend, my
great-grandmother, my father-in-law, my grandfather. These people, all older
than me, were like buffers between me and death. But as each one died, death’s
impact on me was greater, and it brought my own death closer. And, as has
happened in generations before me, at some point, following a natural course,
there will no longer be any older people to serve as a buffer between me and
death. My number will be the next in the line. </div>
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<br /></div>
<div class="MsoNormal">
I know death can come “before its time,” but
psychologically, we assume that we’ll have 60-90 years.</div>
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<br /></div>
<div class="MsoNormal">
As death becomes more imminent, there are decisions to be
made, especially with modern medicine’s abilities to circumvent the body’s
decline to the last breath. And from other family members, as they go through
the process, we can learn lessons. We can learn what death is as an experience
and what is the best course to take as the process occurs.</div>
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<br /></div>
<div class="MsoNormal">
For my husband and me, death came much closer in September
of 2017 when my mother-in-law died. He was the only one of his family in town
and seeing to his mother’s daily needs; his sister having moved to Wisconsin. </div>
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<br /></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhacLMWLNlE7hiD6xyacjSfTM3R7K_2duicDUfK21VShJGiq2fxd4vjYWiay3XHHn34AyHM4Gj1zcgrO3xIH9oW0fEzW9tDhMjkPOfPh4rLwuAIN2S0SIpJpXLEkHjX6ez15Bl8E5mMI3gS/s1600/Nellie.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1228" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhacLMWLNlE7hiD6xyacjSfTM3R7K_2duicDUfK21VShJGiq2fxd4vjYWiay3XHHn34AyHM4Gj1zcgrO3xIH9oW0fEzW9tDhMjkPOfPh4rLwuAIN2S0SIpJpXLEkHjX6ez15Bl8E5mMI3gS/s320/Nellie.jpg" width="245" /></a></div>
One morning, my husband called his mother, as he did at
least twice a day. She lived about 25 minutes north of us. Once a week, he
would visit in person and run errands for her, and he would take her to any
doctor appointments when needed. She had just been to the doctor the week
before. But this morning, she did not answer the phone. So he drove up there
and went through the door and found her sitting in her chair, but with a blank
look in her eyes. She leaned forward, but when my husband asked why she didn’t
answer the phone, she said she didn’t hear it. Although she was responsive, he
could tell she wasn’t fully alert and cognizant. He thought her oxygen (treatment
for COPD) must have been too low or failed during the night.</div>
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<br /></div>
<div class="MsoNormal">
My husband called the paramedics, who said her blood oxygen
was low and said her lung function was low. They gave her some oxygen and told
her they were taking her to the hospital. Not long after arriving at the
emergency room, she had regained her full mental ability. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
From that point to about 3 weeks later, her situation became
a cascade of interventions and negative body responses that ended in her death.
Decisions were made by my husband and his sister and by the hospital staff, and we learned
lessons from it. I think many others can benefit, so I am sharing these lessons
here. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Lesson #1: Smoking
Kills, not just by Low Oxygen</b></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXBZpenfMqrxUvGVDCOltWmgkxbKKmM6MZMknxmwpkfjNpvz97myCoge4qYbw0WOAJHu9dXXkxufoSEvqQ1OFPyNrsw-TTGjsM4xzEkxKHDPHShe7QzEPzaDV2_0lmAEKT-kRb5N9fWQk1/s1600/skull-and-crossbones-1501864_1920.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXBZpenfMqrxUvGVDCOltWmgkxbKKmM6MZMknxmwpkfjNpvz97myCoge4qYbw0WOAJHu9dXXkxufoSEvqQ1OFPyNrsw-TTGjsM4xzEkxKHDPHShe7QzEPzaDV2_0lmAEKT-kRb5N9fWQk1/s320/skull-and-crossbones-1501864_1920.jpg" width="320" /></a></div>
My mother-in-law smoked from her 20s to her 60s. She was a
nervous smoker, most often seen sitting at a dining room table and puffing on
the white stick to ease her nerves from having to interact with people. When she
was diagnosed with emphysema, she quit. But the damage was done.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The treatment is oxygen and what my mother-in-law called her
“puffer,” which I think was an inhalant steroid. She complained of being short
of breath from time to time. But her oxygen levels were kept up by these
treatments. It was in the healthy range at the doctor’s office just the week
before.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One time, a nurse explained to my mother-in-law that she
isn’t suffocating, as is revealed by the normal oxygen level in her blood. But
she feels a tad short of breath, then her anxiety shoots up, and that makes her
more short of breath. If she could just calmly respond without the anxiety, it
will lessen. Because, she was told, her oxygen levels were normal.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Within the three weeks after that morning she was taken to
the hospital, she went into multiple organ failure. We couldn’t understand why,
if the oxygen levels were kept up most of the time. But the failing of the
lungs has another effect that cannot be treated: the buildup of carbon dioxide.
Healthy lungs not only take oxygen into the blood stream and cells, but it
pushes out the poison of carbon dioxide. And nothing was being done or could be
done to replace that function for her body. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We found out about this other
result of COPD by doing some research on the internet while she was in the
hospital. And when we later discussed our confusion at this downturn despite
oxygen being up most of the time, the hospice nurse also told us what we had
read on the internet: that carbon dioxide poisoning also contributes to death
for people with COPD. In fact, the Australian Lung Foundation says receiving
too much oxygen can itself increase carbon dioxide poisoning. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Was that morning of her disorientation a sudden decline from
the COPD or was it a result of not being on her oxygen during the night? We
don’t know. But whatever happened, it was originally the smoking and resulting
COPD that killed her.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Her older sister also smoked, as was common in that
generation, victims of the cruel trick that advertising and American pop
culture played on them. But she quit much earlier. And she is still alive.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Lesson #2: Ventilator
Sedative May Cause Neurological Problems</b></div>
<div class="MsoNormal">
So my mother-in-law remained mentally alert and cognizant
after she arrived at the hospital. Also, no signs of a stroke.<span style="mso-spacerun: yes;"> </span>Because of her age, 82, they wanted to keep
her for observation and check her heart. She was then moved to a metropolitan
hospital 45 minutes away because the smaller hospital did not have a cardiologist
on duty during the weekend. No sign of a heart attack, no chest pains, but her
age was a risk factor for a sudden heart problem. Better be safe, they thought.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We had been through this with her multiple times in the
previous year. Something leads her to going to the emergency room. They suspect
her of having a heart attack. The heart function is fine. They want to do a
heart cath. She says no, since the EKG is fine and no heart symptoms, no
chemicals of heart being in distress. In just the previous incident at a
hospital, the cardiologist there said her heart was strong.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This time, my husband comes in to the big-city hospital the
next day and is then told that they had to put her on the ventilator. Her
oxygen level dropped the night before. How much? We don’t know. We suspect it
was minor. Could they have instead increased oxygen tank output and avoided the
ventilator? We don’t know. But she was in a hospital ICU, and they did what
hospital ICU staff are trained to do, act like it’s an emergency and take
strong measures.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What we do know is that after they removed the ventilator a
couple of days later, she never regained her full mental abilities. She was
lucid only for brief moments. She also could no longer swallow anything. When
asked, my husband was told by hospital staff that her “speaking out of her
head” and inability to swallow was because she was just very sick. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We found out later from the hospice nurse that the sedative
used for putting someone on a ventilator <a href="https://www.medicalnewstoday.com/articles/266626.php">can cause delirium</a>;
in fact, 80% of them do. And <a href="https://www.theatlantic.com/health/archive/2015/06/the-overlooked-danger-of-delirium-in-hospitals/394829/">the
elderly are at a higher risk</a>.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We will never know for sure whether the post-ventilator
inability to swallow (seemingly neurological) and the more consistent cognitive
problem was from the ventilator sedative or just a sudden and coincidental
worsening of her condition. (Remember, the thing that prompted her being put
into the hospital was her sudden cognitive problem.) It is also possible the
short oxygen drop caused some brain damage, although we don’t think it was that
low. She had quickly recovered her mental function the first day, and the
permanent mental decline and sudden inability to swallow did come after her
being on the ventilator.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And it is a known thing, especially in the elderly. The ICU
nurses at the hospital said nothing about this sedative-induced effect when we
asked why she got mentally worse. Maybe they didn’t know. Or maybe they didn’t
want to admit that possibly the sedative they used when putting her on the ventilator
caused a worsening of her condition.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If a ventilator is needed or you can foresee it might end up
being needed, I recommend having a conversation with doctors and nurses to find
out if there are options besides the sedative that is known to cause these
neurological problems in many patients. <a href="https://www.theatlantic.com/health/archive/2015/06/the-overlooked-danger-of-delirium-in-hospitals/394829/">Researchers
say 40% of the delirium cases from ICU stays can be avoided</a>. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Lesson #3: Treatments
Can Cause Problems</b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Feeding Tube:</b> She
had to be put on a feeding tube and excrement removal tube, so to speak. During
this time, a question was raised about the feeding tube instead being put in
the torso directly to the stomach. At some point, the doctor asked my
mother-in-law, during a brief point of her being mentally alert while no family
was there, whether she wanted the torso feeding tube. She said no. We didn’t
think until later that maybe we should have told the doctor that my
mother-in-law tended to start all her sentences with the word “no” as a word
whisker. But we figured there were other problems that can come with the torso
feeding tube, and it would have to be redone if the situation lasts awhile. So
my husband agreed with that decision and let it go. We still had hope that she
could recover.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Heart Arrhythmia:</b>
At this time, she also developed an irregular heartbeat. So, to prevent a clot,
they started giving her blood thinners. But, those blood thinners started
causing some mild intestinal bleeding. So they cut back on the blood thinners.
At some point, my husband got a call one night asking for permission to give
her a blood transfusion. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj00ewbjmNM8eIIG7BhlXhRRTQvu0GcJd81F6VagU8zkhCT3Hp8-03ErdabrsgvULu-JfWARQkdnsIZcvp9acJpyXtrGIACosa_Li9NrnjfwhPMtd-f1f2Tjasx2cER97bgTiAbNJ7TToJj/s1600/hands-770461_1920.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1071" data-original-width="1600" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj00ewbjmNM8eIIG7BhlXhRRTQvu0GcJd81F6VagU8zkhCT3Hp8-03ErdabrsgvULu-JfWARQkdnsIZcvp9acJpyXtrGIACosa_Li9NrnjfwhPMtd-f1f2Tjasx2cER97bgTiAbNJ7TToJj/s320/hands-770461_1920.jpg" width="320" /></a></div>
<b style="mso-bidi-font-weight: normal;">Arm Catheter:</b> She
also developed pneumonia. This was not a surprise because there is a thing
called “ventilator-associated pneumonia.” (Another thing to be considered when
deciding whether to use a ventilator.) Plus, she was lying in bed and had limited
lung function, both of which increase chance of pneumonia. So antibiotics were
started. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The pneumonia went away; then it came back. A different
antibiotic was tried. At some point, a stronger antibiotic was needed and they
put a catheter in her arm to administer it. The catheter went all the way from
the arm to her chest. The result of that was that a blood clot was formed and
her arm started to swell. But because of some bleeding that already happened,
they did not want to give blood thinners. There was also the concern that blood
thinners might dislodge the clot, so that it then goes to her heart or lungs. So
her arm just got bigger and bigger and bigger. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As you can imagine, we questioned whether this catheter was
the right decision. Before that, she was given meds through an IV. But, I spoke
to a friend of mine who was an ICU nurse. She said some antibiotics are so
strong that they burn the veins. That is why they are sometimes administered
through a catheter. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Circle of problems:</b>
So more problems were developing, some of which were caused by the
interventions meant to fix things. And some treatment options could not be used
to fix a problem because they would exacerbate another problem. At that point,
we could just hope that her body would do what was needed to reverse the course
she was on. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The staff needed to know how far to take any sudden crisis saving
measures. The nurse told my husband that if my mother-in-law went on the
ventilator again, she would likely never come off and be able to breath on her
own again. In consideration of conversations he had with his mother in
the past and with the agreement of his sister, he told the nurse to not put her
on the ventilator again. She was given a DNR designation.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Lesson #3: Nursing
Home Care is Mostly Medicaid, not Medicare</b></div>
<div class="MsoNormal">
We hear in the news media about Medicare as the primary
source of healthcare funding for seniors/elderly. And, based mostly on news coverage,
I thought that Medicaid was for caring for the poor. As my mother-in-law’s
condition in the hospital was not improving and seemingly not going downhill
fast, we were thinking she might be in this “not cognizant and unable to feed
herself or even swallow” condition for weeks or months. I knew from my
experience with my great-grandmother that once the hospital decides they cannot
help the ill person, we will have very little time, a day or two, to find
another option for her care. Of course, her condition was such that she could
not go back to living in her apartment.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In making calls about nursing homes, I found out that
Medicare only covers the first three months. Usually, as part of the process,
an application is made for Medicaid and that means the person’s assets must be
low enough to qualify. I vaguely knew something about “the government” taking a
person’s house to pay for nursing home care. But I found out more how it works.
Medicare covers nursing home care for 3 months, then most assets are used up to
pay for it while application for Medicaid is processed. It also includes using
her Social Security income. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s less common for someone to have a rich family member
who can pay for the nursing home care or have long-term insurance that will
pay. Even those insurance policies usually have a time or a maximum benefit
limit. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some stats:</div>
<ul>
<li><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font: 7pt "Times New Roman";"></span></span></span>The average annual cost of nursing home care in
Alabama is $73,000 for a semi-private room. (Genworth)</li>
<li>Medicaid is paying for the care of 62% of
nursing home residents in the US. (Henry Kaiser Family Foundation)</li>
</ul>
<div class="MsoNormal">
So the perception I have of Medicaid being only for the poor
is not accurate. How many middle-class families can afford to cover that annual
cost? So Medicaid is also for most of those in nursing homes who will become
poor so they can get coverage because Medicare does not cover their long-term nursing
home care. And, the amount <a href="https://www.mcknights.com/guest-columns/understanding-medicaid-reimbursement/article/441886/">Medicaid
pays nursing homes is less</a> than what they can charge if payment is from
private insurance or individual pay. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we hear of proposed cuts to Medicaid, I will think of
nursing homes now, instead of just thinking of the poor. If the amount states
receive for <a href="http://www.businessinsider.com/what-is-medicaid-who-could-lose-coverage-under-senate-healthcare-bill-2017-6">Medicaid
is cut</a>, the states will have to take some action, such as increasing the
state-portion of the reimbursement, or make the requirements for receiving the
benefit more strict (person must be more disabled), or limit the amount paid
for the services, or put a lifetime limit on the benefits, or require family to
pay part of it. Most of these pose a threat to the income amounts nursing homes
receive from 2/3rds of their residents, which may cause some nursing homes to
close. I’m not taking a political position for or against anything.<br />
<br />
But I do
think it’s a good to know, a lesson we learned as death came closer to my
husband and me with the experience of his mother, that Medicaid is something
many middle income people will end up using as they go to nursing homes; it’s
not just for the poor. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Lesson #4: When Death
is Known to be Close, the Type of Care Changes</b></div>
<div class="MsoNormal">
Within a couple of days of our checking into nursing homes,
we were told my mother-in-law’s pneumonia was now a type that does not respond
to antibiotics and that she had developed sepsis. We were told she is in
multiple organ failure. Discussions with nurses and the pulmonologists about
the future grew more dim. And so it was no surprise when we were told she would
be released to hospice care as she was actually in the dying process and no
intervention could reverse it without causing or worsen other problems. The
question of how long before she would die could not be answered for sure.
Estimates were a week to 3 weeks.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We found a hospice company, and the hospital and that company
made the arrangements for my mother-in-law to be transported by paramedics back
to her apartment. My sister-in-law came down so she and my husband could run
12-hour shifts of sitting with my mother-in-law.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The feeding tube was removed, and some morphine was given to
my mother-in-law to keep her calm and more comfortable while being transported.
The medical bed was right in the living room. My husband came home to sleep and
my sister-in-law slept in the bed in the apartment during my husband’s shift. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The hospice nurse gives information to help the family know
what to do and what to expect. Many think they know what medical help they want
in that situation, such as water, feeding tubes, ventilators, etc. But you may
see these things are not in the best interest of the dying person.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the case of my mother-in-law, the hospice nurse said that
since she can’t swallow, giving her water would just allow the water to go down
into her lungs and put her in distress and cause more discomfort. So, she said
that whether to give drinks of water or continue oxygen was up to the family,
but the change should be from an attitude of giving her body what it needs to
survive or improve to an attitude of doing what is going to make this
transition to death the easiest and least distressful or painful as possible. Some
measures that in other situations will help the person, in this case, only
prolong suffering. Changing to that attitude can be difficult and contrary to our natural instincts.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My husband decided to not have any smell of cooking food in
the apartment, again to lessen distress or discomfort for his mother.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The hospice nurse showed my husband and his sister how much
of the liquid morphine to give and how to give it. It’s dropped in the mouth.
She said not to worry because he can’t give her too much, but more than what is
suggested doesn’t help her more. The most she would need is 5 drops.</div><div class="MsoNormal"> </div>
<div class="MsoNormal">
I also learned that morphine is for more than just pain. It
was also to, basically, put her back to sleep and prevent her from become
distressed. So if she woke up, they gave her morphine. And based on the level
of her distress, they decided how many drops to give.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The hospice nurse also explained what my mother-in-law’s
body would do in the last moments of life. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The whole thing is terrible, but it was made much easier by
the knowledgeable and comforting guidance of the hospice nurse. As my husband
told her, they are doing a very important service to humankind, helping in many
ways when an inexperienced family faces the most difficult challenge we humans
face. As my husband says, “Those who died before us have not experienced
anything different than what we all will experience.” And what I say, “None of
us get out of here alive.” So knowing about the experience and how to best
manage it is something we all can benefit from.<br />
<br /></div>
<div class="MsoNormal">
It turned out that death came to my mother-in-law within 2
days of her coming back to her apartment. We didn’t deal with this lingering
for weeks or months.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Lesson #5: Funerals
Don’t Have to Be Expensive</b></div>
<div class="MsoNormal">
A year or two before she died, my mother-in-law decided she
wanted to be cremated after her second husband was cremated. She saw how easy
it was on the family and less invasive on the body than embalming and having a
“showing” at the funeral home. So, in harmony with her wishes, there was just a
graveside service. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She did not have lots of friends, being 82 and having been
widowed from 2 husbands. She had casual conversation with neighbors, but even
stopped doing that in that last year. She depended socially and in all other
ways on family. Her sister, her nephew and her niece, her sisters-in-law, one
of her granddaughters and some of my family were there. Marriage mates to these
people and my sister-in-law’s high school friend came. It was about 20 people.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The ashes were buried in a family plot next to my
father-in-law. The headstone was already there. There was no cost for the plot;
it’s next to a country church that doesn’t charge for members of the church or
their families. The grave diggers are volunteer custodians of the cemetery. Of course, we donate to the upkeep every time we visit the
cemetery, which is about 4 times a year. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Because we did not use the funeral home except for
transporting the body to the funeral home and cremation and buying the urn and
placing the obituary and ordering the death certificates (didn’t have any
funeral service there), did not buy a casket and did not have to pay for the
headstone (it's a joint one with her husband and was already there) or the digging, it was not expensive at all. We did have to pay for
her death date to be engraved in the headstone. (Another lesson: getting the
headstone engraved takes weeks to months. They are in high demand. Be patient.)
And we bought a flower spray, and I printed out a bigger version of a picture
of her that we put in a frame in the middle of the spray. The pastor was given
a stipend.<br />
<br /></div>
<div class="MsoNormal">
The end total was about $3,400.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you have any lessons you’d like to share or if you have
questions, please make a comment. I’d love to read them and I’m sure others
could benefit. </div>
Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com0tag:blogger.com,1999:blog-8378332272337029621.post-36028352675317620332018-02-04T21:07:00.002-06:002019-01-06T14:33:15.701-06:00December CFSAC Part 2: Touchdowns Will Win the Game<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCE91VqVXMC-dRrxuuwvT28hBzuox5pQUFwRbuThYuVU41n5u0NbQnj7r3H2S5aBPZPjwUBem-dUcCNP36xHJVMjWKxwJN36MpoOAP3F4AvHHzyWAwLZCHCnfx7UKPxfD1gfp-IArwPsyG/s1600/Aviary+Photo_131622735531056647.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="559" data-original-width="1173" height="190" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCE91VqVXMC-dRrxuuwvT28hBzuox5pQUFwRbuThYuVU41n5u0NbQnj7r3H2S5aBPZPjwUBem-dUcCNP36xHJVMjWKxwJN36MpoOAP3F4AvHHzyWAwLZCHCnfx7UKPxfD1gfp-IArwPsyG/s400/Aviary+Photo_131622735531056647.png" width="400" /></a></div>
In this Part 2 of my review of the December 2017 Chronic Fatigue Syndrome Advisory Committee meeting, I'll address a question discussed there: Should we target specialists or primary care doctors in a physician education project?<br />
<br />
<div>
</div>
<div>
Dr. Jose Montoya said in the meeting that the best place for the type of clinical care SEID (systemic exertion intolerance disease) patients need is in the specialist setting. I absolutely agree. Those who are our experts now give a long time to each patient, an amount of time that is not profitable for each patient in a primary care setting. Our medical care system is still set as a pay for service. </div>
<br />
"It's not unusual for primary care doctors' appointments to be scheduled at 15-minute intervals," says a <a href="https://www.usatoday.com/story/news/nation/2014/04/20/doctor-visits-time-crunch-health-care/7822161/" target="_blank">2014 USA Today article</a>. This is not a match for our multi-system, multi-symptom, multi-treatment disease.<br />
<br />
<div>
</div>
<div>
Setting aside the time element, there is also the level of knowledge needed. Specialists are specialists because they know more than a primary care doctor about a segment of diseases. If any disease needs in-depth knowledge to give good management, it's this one. Given the few SEID patients each primary care doctor will see, there is no incentive to take the amount of time needed to really know this disease well. If they need to spend time researching ailments, they need to know colds, bug bites, flu, rashes, diabetes, and managing high cholesterol. <br />
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<div>
</div>
<div>
That leaves us with two options: create a new specialty or try to get an existing one to embrace the disease. The former is difficult because specialties (or in today's system, subspecialties) start as fellowships in medical schools. A specialist is one when they have some paper that says they have an education in that particular area. <br />
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<div>
</div>
<div>
Considering this disease isn't even taught in many medical schools, getting a widely impactful initiative of fellowships at these universities is like winning the National Championship game against Alabama's Crimson Tide, very low chance of being successful. (My football reference throughout is a follow up to my review in Part 1. Plus, today is the Super Bowl. Ironic since I'm not a football fan. But I know enough. I live in Alabama. And today I worked on one of my clients' websites: a prep football team.)<br />
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<div>
</div>
<div>
The latter option presents another problem, as expressed at the meeting by Solve ME/CFS Initiative president Carol Head. And that is--which existing specialty? While I have my opinion, it is fraught with possible mistakes. And will likely, like the name issue, not have the support of all our experts or patients. More controversy, that's what we need. (rolling my eyes) I'm not going to give my opinion on this issue because my next point is more important.<br />
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<div>
</div>
<div>
<b>Quickest and Cheapest Way to Do the most Good</b></div>
Having expert specialists in our disease all over the country, as is available to MS patients, would be like winning the game. It is the ultimate goal. And it should be pursued. <br />
<br />
<div>
</div>
<div>
But, to win the game, you need some touchdowns. To get some touchdowns, you need first downs. To get some first downs, you start with possession of the ball in your opponent's territory. And before you can start making progress toward your opponent's territory, you got to get possession of the ball. <br />
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<div>
</div>
<div>
While we all love the drama and excitement of the long pass that the receiver then runs down the field, conquering yard after yard after yard after yard, it's often that the best goal is to just get the next first down. The ball is handed off to a running back who tries to go straight up the middle. He may make just 5 yards, but that's progress. And sometimes it gets a first down. <br />
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<div>
</div>
<div>
We've come to understand the biology of the disease incrementally. Yet, we've seen practically no progress, incrementally or bigly, in physician education. We're way back in the red zone. We have a long, big field of yardage to make progress in.</div>
<br />
So, what is the quickest and easiest way to get a touchdown? I say that we take it with the first goal of getting patients to get an accurate diagnosis. We can get the specialists who know how to treat it after we get some more touchdowns. But, let's get some points on the board.<br />
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<div>
</div>
<div>
Why would the first goal be to get it where any patient can go to their doctor and get diagnosed? Because the benefits of just getting diagnosed are tremendous. And most patients will first go to their primary doctors with what seems like a flu that won't go away or because they feel tired and can't sleep well. That is usually the entryway into the rabbit hole / labyrinth for a new patient. So if we got all the primary doctors in the nation to know the criteria and know how to diagnose it (and because it comes from a credible source, they believe it), what benefits would we have?<br />
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<div>
</div>
<div>
<b>Benefits of Just Getting a Diagnosis</b></div>
<ol>
<li>Stops the costly and time-consuming search. The doctor to doctor to doctor (complete with three months between each one) and referral after referral after referral would stop, just by the patient getting a diagnosis from their primary care doctor. Time and money will be saved. </li>
<li>Brings emotional and psychological relief, ends the fear of the unknown. Many of our experts say they see it in their new patients. No more worrying that they have some strange, unknown infection that may kill them.</li>
<li>Brings validation that it is not depression or psychosomatic. Some patients doubt themselves, doubt what their own body tells them. And they may blame themselves by making mistaken assumptions of the disease. A correct diagnosis that they have a disease of systemic exertion intolerance will validate that what they feel is real and in their body.</li>
<li>Gives them something to tell family, friends, and people at work. Dealing with self-doubt is a problem, but even for those who are confident they are sick, without a diagnosis, they have to deal with not having any explanation to give family or friends of why they aren't as productive, as reliable, as present. Guilt can be reduced when they can tell others they are sick with something and it has a name.</li>
<li>May help patients decide their course, whether to retire early, whether to file for disability, whether to forgo having children, whether to move, whether to stay in the home, whether to continue with building that new house, etc. If a patient is disabled, having a diagnosis is important to being approved for benefits. And in some cases, disability is the best option. But that option is out of reach if there is no diagnosis. And a person may not know to pursue that option unless they know they have a chronic disease with little chance of recovery.</li>
<li>Empowers patients to go online and find the treatments or specialist that they may need. It would be good if they can get that referral to an expert from their primary care doctor, or get expert recommendations for treatment. But that is winning the game. In the mean time, having a diagnosis provides what the patients need to find that information themselves. Most of the patients I know had to go online to find this. Give the new patients the information they need to do the same. We can get this touchdown first.</li>
<li>Brings us closer to doctors becoming experts. How many of the many doctors out there are potential experts in our disease? Finding out what this disease is and how it is diagnosed may prompt a doctor to find out more. His curiosity may be peaked, he will start identifying some among his own patients who have it. And that also may prompt some to go to the CDC or PubMed (database of research studies) and learn more. But if they don't know about the disease or how to recognize it, they won't take that next step.</li>
</ol>
I think we can pursue many efforts at once. But given the place we are starting from and how early we are in the game of physician education, we need to identify our priorities. What play is going to get us the most yardage and get us our first touchdown the quickest? <br />
<ul>
<li>First, do a mass effort to get the Institute of Medicine diagnostic criteria into all first-line healthcare providers. </li>
<li>Second, do the same for specialists who might have a SEID patient referred to them: sleep specialist, rheumatologists, etc.</li>
<li>Third, give simplified treatment guidance, something that can fit on half a page. We can have it all in one page: diagnostic criteria and five treatment, activity and exposure change recommendations. Keep it simple. </li>
</ul>
<b>Simple Additional Information that Can Be with the Diagnostic Criteria</b><br />
<div>
I know that something distributed from a reputable source will first require some evidence, studies or something like that. But here are a few simple things that primary (and specialty) doctors could know, if we did a campaign of diagnosis and treatment suggestions:</div>
<ul>
<li>SEID patients tend to have exaggerated and unusual side effects to drug treatments. Start low on any symptom drug treatment.</li>
<li>Exertion harms the body systems and what constitutes exertion is on a spectrum, differing in each patient. Tell patients to never push through the fatigue. It's a warning signal and will lead to a crash.</li>
<li>Take regular breaks. Break up activity into smaller segments, using a time clock or other method to include breaks.</li>
<li>Breaks should be lying down and without any sensory input and without any mental activity. </li>
<ul>
<li>Lying down helps the patient to recover from the orthostatic intolerance (due to low blood volume and inability to sustain normal blood pressure) and get more nutrients to the brain. </li>
<li>Any sensory input requires energy and hinders recovery from the activity.</li>
<li>Mental activity requires energy and hinders recovery from the physical activity. </li>
<li>Finding a dark, quiet room, or lying down in the car for mini breaks during the day, possibly during lunch, or four times a day, for at least 15 minutes, much longer for more severe cases, will help prevent "crashes" of a big increase in sickness symptoms and debilitation</li>
<li>Do some activities sitting down, such as chopping vegetables or folding laundry.</li>
</ul>
</ul>
If we can't include these treatment suggestions due to lack of validation in a large study or because of bureaucracy of some agency, we should still move forward with just getting doctors to know how to diagnose it. That would be a big touchdown and bring many benefits sooner rather than later.Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com1tag:blogger.com,1999:blog-8378332272337029621.post-20481216152605840142018-01-24T19:06:00.003-06:002018-02-04T21:31:22.050-06:00December CFSAC Commentary (Part 1)<div class="separator" style="clear: both; text-align: center;">
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<br />
The December Chronic Fatigue Syndrome Advisory Committee meeting reflected much progress. It's refreshing to see some new faces taking up the advocacy. As one group let's go or moves on or dies, another takes hold of pushing the government forward, giving voice to the patient experience. And they do so with such credibility, bringing passion and reasonableness, and real-world patient and professional experience. Our patient and patient organization advocates are themselves experts. They are impressive in what they bring to the discussion.<br />
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And I just can't get over the difference in attitude and effort and knowledge of our current ex-officios (except a few, of which I'll address later). I remember when the <strong>FDA</strong> ex-officio slept during the meetings--and when he had to participate, showed himself to be a real prick. I just can't get over how knowledgeable the current FDA rep Dr. Keith Hull is about our disease. And I've not seen him before. Very impressive. He was helpful in the discussion even when it wasn't directly about the FDA.<br />
<br />
Remember when the ex-officio from the <strong>CDC</strong> wasn't even in the CFS department of that agency? He would give a report prepared by someone else, and when someone at the meeting asked him if the CDC could do something on the disease, he'd have to say he would find out from that department and report back. Now we have the official ex-officio from CDC's CFS program and the leader of the department, both of them, fully engaged. Thank you, Dr. Ermias Belay and Dr. Elizabeth Unger. The difference you brought is tremendous. It took time, and you had to take a lot of abuse, but you're compassion and dedication and intelligence drove you to keep working for us patients, and you are producing some good results. It's evident in what you are doing and how you engage and what you say at the CFSAC meetings. I can't say enough of what a difference it is from what the CDC had before. It takes time to redirect the federal government ship to get it going and making progress in a new direction. Just keep going. Results will surely come.<br />
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The <strong>NIH</strong> ex-officio, Vicki Whittemore, is pushing forward to make things happen in research. She found a way, because she has the will. Why couldn't others do what you have done? Kudos!<br />
<br />
And Mister Comedian, the <strong>AHRQ</strong> guy, Dr. Ted Ganiats, how wonderful that you are knowledgeable, practical and providing some light-hearted relief. I also note your humility. What a breath of fresh air. You were offering suggestions on everything, looking for solutions, pointing out the big picture and real-world obstacles to be considered. And you ought to be a blogger. Your wit needs to be exposed to a larger audience. Next time we do a conference for our disease, we'll get you to do the stand up comedy routine.<br />
<br />
And the <strong>DFO</strong>, Gustavo Cieno. You know, some people just aren't suited for dealing with the public. But you, sir, you are doing a great job. Your gentle voice, respectful tone, and humility are such a contrast to what we've had recently. You are not only eager to serve, but you know how to break down barriers. I hope you stay in this position for a long time. <br />
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Where can we see improvement? Miss <strong>HRSA</strong>, I appreciate you aren't permanently appointed to serve on this committee. But after listening to the discussions and seeing the great need, I hope you'll consider asking to take the position. You already know more than others in your agency. <br />
<br />
Mr. <strong>VA</strong>, Dr. Drew Helmer, you must know that the CFSAC, especially patients, have big issues with how your agency is treating this disease. Some ignorance was revealed in your words. However, I do note a willingness for you to learn and to consider other positions. I hope you'll be willing to work with other government agencies as they have already made needed changes. Hopefully, next time, you'll be able to report some changes in the VA website and a program for getting VA docs to know the distinctive disease. Your agency is lagging behind the rest in this area. But I sense you too can help the VA catch up. We want you to join us. Come into the loop.<br />
<br />
Miss <strong>Social Security</strong>, some good and some not so good. I'm afraid some ignorance was revealed. The first thing you need to know is that our disease is not "chronic fatigue." People don't get disability for a diagnosis for "chronic fatigue." We, the patients, find it offensive to refer to our disease this way. Ignorance is an excuse once. But don't do it again or you'll run out of patient patience and get some wrath. Besides, there are quite a few other labels you can choose from. (rolling eyes) You had some disease specific stats. I remember when we CFSAC had to specifically ask for that. So that's progress. And some of the questions to you seemed a bit unnecessarily overly specific, in my opinion. But you are willing to get that info and come back. Good. One other thing I should mention is that you should have expected to be asked why favorable rulings from judges for applications under all diseases decreased in certain years. I would have expected that, if it is agency-wide, it would already be analyzed by your agency and you would know. And I'm surprised you didn't expect you would be asked that question. <br />
<br />
Another point that needs to be made is the big difference we have in collaboration between agencies. Wow! That is really moving things forward. We have some in the government who are forming a team, our team, to help us. Coming from Roll Tide country, I'll say I'm looking forward to lots of touchdowns from this team. <br />
<br />
In Part 2, I'll give some recommendations. Stay tuned. As for the committee members, I have some advice, backseat driver talk, if you will. If you have enough patience to indulge my pontification, you might find a helpful nugget. I'll break it up by topic.Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com1tag:blogger.com,1999:blog-8378332272337029621.post-73391520299586378302017-03-31T14:11:00.001-05:002017-06-15T13:04:48.643-05:00Introducing Victor Darley-Usmar, PhD, an Alabama Researcher Now Helping in a SEID StudyDay after day, from my bed, I watch my social media newsfeeds for some news on my disease, especially for anything happening locally in Alabama. But news, by nature, often comes when not expected. And this happened in October, while I was watching <a href="https://www.facebook.com/OpenMedicineFoundation/videos/956825444421877/" target="_blank">a video from Open Medicine Foundation of a presentation at the International Association of CFS/ME conference</a>. <br />
<br />
Dr. Jon Kaiser was speaking, and he said: <br />
<span style="color: #38761d;">“There’s a researcher named Victor Darley-Usmar at the University of Alabama, who works with the Seahorse company—and I think he’s a genius. He is developing an equation to take all the data that the Seahorse test provides and distill it down into a single number called the—he calls it the ‘BHI,’ the bioenergetic health index. So, you know, it would be like getting a PSA or [inaudible]. You get a bioenergetic health index from a blood sample, looking at white blood cell mitochondrial energy production. So I think that’s the cutting edge of this field, and once we start sending our patients who present with ME/CFS, just as an example, we can start [inaudible] whether their disease severity winds up with the severity in their mitochondrial [inaudible].”</span><br />
<br />
<h2>
Who is Victor Darley-Usmar, PhD?</h2>
Living in a major metropolitan city that has always been absent expert clinical care for my disease and, from 2003 to 2014, no research in the disease, I get excited when the name of a researcher or doctor in my part of Alabama is connected to systemic exertion intolerance disease (aka “SEID” or “ME/CFS”). I wondered just who this “genius” is right here in Birmingham and what has he done that may help people with my disease.<br />
<br />
My Google search took me to Wikipedia, which tells me Victor Darley-Usmar, PhD, was born in England and that he is a “free radical biologist and biochemist” and the UAB endowed professor in Mitochondrial Medicine and Pathology. (Note: “UAB” stands for the University of Alabama at Birmingham, which is different from the University of Alabama. UAB is well-known, even internationally, for medical care—especially cardiac and AIDS—and medical research.) <br />
<br />
Darley-Usmar’s career journey included stops at the University of Oregon for a postdoctoral fellowship from 1980-1983, appointment as assistant professor at Japan’s Tsukuba Medical School for 2 years, then to Kent, England, to work as a senior biochemist at Wellcome Research Laboratories for 10 years. Then UAB recruited him to the Heart of Dixie, the land of fried chicken and sweet tea, right here in sweet home Alabama. He’s been here for over 20 years.<br />
<br />
He has <a href="http://www.uab.edu/medicine/diabetes/faculty/faculty-bios/93-victor-darley-usmar" target="_blank">a profile on UAB's website</a>, but he said it needs updating, so he prefers the information in a bio he sent me. It says he’s in the Department of Pathology. “He has received multiple awards for training and mentoring and served as the Associate Dean for Post-Doctoral Education and the Pathology Graduate Program Director,” it says. “He established the UAB Center for Free Radical Biology from 2006-2015 as an international center for research in redox biology.” And, it further says: “In his own research program he has been instrumental in defining how redox biology modifies mitochondrial function in pathology and in recognition of these achievements was awarded a Lifetime Achievement Award by the Society for Free Radical Biology and Medicine in 2012. . . He was a recent recipient of the prestigious 'Creativity is a Decision' and 'Blue Sky' awards from UAB for the Bioenergetic Health Index concept. He has been continuously funded by NIH for 20 years and has published over 300 articles with an H factor of 92.” <br />
<br />
For a recent interview, I found Darley-Usmar in the 5th floor of a Birmingham brick building, part of the UAB campus, which takes up about a third to half of the downtown grid. His office has the standard elements of desk, computer, and chair, but it is rectangular to include a small conference table and a white board attached to the wall opposite his desk. Sitting on the table are a projector and the connected laptop to show charts for explaining the science, which he was glad to have the opportunity to do for this unlearned interviewer.<br />
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When he spoke, he sounded very scientific to me, simply because I am accustomed to hearing scientists talk with an accent in news media interviews. And Darley-Usmar still has his, along with the occasional “isn’t it?” that the British add to the end of sentences for emphasis. He’s of short to average height and has a serious but friendly appearance, complete with a beard. He speaks in an even and measured tone that we are used to hearing from scientists: not excitable, but occasionally he gives a joking/witty answer. And he’s patient, as I tried again and again to connect with him to do this interview since I saw him listed as one of the scientists of a recently funded Nevada University study. Finally, with his cooperation, we made it happen.<br />
<br />
<h2>
His First Experience with a “Fatigue Syndrome” Patient</h2>
His first connection to what he calls “fatigue syndromes” was as a post-doc in Oregon in 1980, when his boss was asked to help figure out the cause of a patient’s fatigue, suspected to be a mitochondrial dysfunction. They found a deficiency in one of the mitochondrial proteins in that patient. “So I always had the point of view that these were real things because I had one straight off that was real,” he said. <br />
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And he said there are documented genetic mitochondrial dysfunctions that cause “fatigue syndromes,” and drugs that alter the mitochondria behavior that cause “fatigue syndromes,” so he figured there could be other mitochondrial-based malfunctions leading to fatigue-causing diseases. “Fatigue, in the end, is a disease of metabolism, isn’t it?” said Darley-Usmar. “And there’s a limit to how many things can go wrong; it’s not infinite.” In some cases, it could be metabolism dysfunction is not the driver of a person’s symptoms but is a result of something else, he said.<br />
<br />
(Personal comment: Just imagine what could have happened if he went into studying our disease back then!)<br />
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After that experience in Oregon, for about 3 decades, his research was mostly in cells and mice. Then, “About 5 or 6 years ago, I said I want to do research in patients,” he said. He felt the testing was good enough to be “translated” into human experiments. This led him to studying bioenergy health in HIV patients at UAB’s well-known HIV clinic. Those patients, who have seen much progress in treatments preventing death, are still experiencing fatigue and premature aging, he was told. And since he is at UAB, his research has been in patients who are already being cared for through UAB’s clinical care services. He’s also studied bioenergetics in alcoholic liver disease, diabetes, and kidney disease.<br />
<br />
(Note from me: This shows how clinical care can help spur more SEID research.)<br />
<br />
And he was also told of other “fatigue syndromes” using the test created at Seahorse, such as a post-cancer-treatment fatigue syndrome. “It told me there is an unmet need for a clinical test” of bioenergetic health, he said, in addition to its research usefulness. And that led to his working with Seahorse to create a test to measure it.<br />
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<h2>
About the Test</h2>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcgbnDr1kP7BxVrSoSEW226xESnJujaashteIFyLuWsM9cWFh4H3jjHlZtcmLjEPBnAil9xkoMwGDbf0rR9m19ZlRRqLRrodnjb4TVavzU2sSmNDJcFY-co19jy3F6X_oeuTyRh0y3N_UJ/s1600/Seahorse+analyzer.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcgbnDr1kP7BxVrSoSEW226xESnJujaashteIFyLuWsM9cWFh4H3jjHlZtcmLjEPBnAil9xkoMwGDbf0rR9m19ZlRRqLRrodnjb4TVavzU2sSmNDJcFY-co19jy3F6X_oeuTyRh0y3N_UJ/s1600/Seahorse+analyzer.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>The Seahorse XFE24 Analyzer</i></td></tr>
</tbody></table>
Seahorse Bioenergetics, <a href="http://www.agilent.com/en-us/promotions/xftechnologyoverview" target="_blank">now Agilent</a>, has created <a href="http://www.agilent.com/en-us/products/cell-analysis-(seahorse)/seahorse-analyzers" target="_blank">three machines</a>. The company’s website says: “Seahorse XF Analyzers measure the oxygen consumption rate (OCR) and extracellular acidification rate (ECAR) of live cells in a multi-well plate to interrogate key cellular functions such as mitochondrial respiration and glycolysis. The instruments perform compound addition and mixing, label-free detection, and automatic calculation of OCR and ECAR in real time.” Darley-Usmar said it more plainly: “It measures oxygen and protons.” He said it is a “break-through technology.”<br />
<br />
According to Darley-Usmar, this bioenergetic health reading shows the cell’s ability to respond to an ATP (adenosine triphosphate, an energy molecule) demand. So it is measuring the cellular energy production capacity, the cell’s ability to produce energy molecules as needed. And there are so many things that can diminish this capacity, which is why he believes the “fatigue syndromes” likely have many different causes. <br />
<br />
The test is not clinically useful, yet, but he and Agilent and UAB and the <a href="http://mitochondrialdiseases.org/" target="_blank">Foundation for Mitochondrial Medicine</a>, a charity, are working toward that. As Kaiser said, the goal is to take the Seahorse machine readings of multiple factors and have it translated into a one-figure score that says what the cell’s energy production capacity is.<br />
<br />
This reminded me of the cardiopulmonary exercise test (CPET), which has been used to show SEID patients are unable to normally use the aerobic system (using oxygen to create energy) a day (or two or three) after they were put under a high-energy demand. In other words, their oxygen-based energy-producing capacity is reduced because of exercising the day before, so they go into a predominant anaerobic (not using oxygen) energy-production system quicker. Anaerobic energy production produces damaging lactic acid and other damaging effects, which is why you can’t last long in an activity if the energy you’re using is mostly from the anaerobic system. <br />
<br />
It sounded to me like this bioenergy health index may measure the same thing on a cellular and chemical level in the blood rather than from the gases in the breath and the heart rate, as the CPET does.<br />
<br />
Darley-Usmar showed me a chart with a sliding scale of cellular energy-producing capacity (aka bioenergetic health). The top level, he said, may correlate to aerobic energy mode whereas a person with low bioenergetic health, according to the blood test, is more in the anaerobic mode, cellularly speaking. The CPET shows a person has an energy-production problem, but testing the capacity of the cells may give clues as to the reason why, he said.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuhYURV2TwC55e8e4SNMJrcVgSDMJcTZs1esjGxdOQuwZYMJl_b7-QqS05EeUwALNA97zIRgraz_MwDImAGOLllLPN5y-yIXMnuKhsK1vVROGpA9vZNJWSH4sIU5pfUHcby4vufukP4QWG/s1600/energy+chart.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuhYURV2TwC55e8e4SNMJrcVgSDMJcTZs1esjGxdOQuwZYMJl_b7-QqS05EeUwALNA97zIRgraz_MwDImAGOLllLPN5y-yIXMnuKhsK1vVROGpA9vZNJWSH4sIU5pfUHcby4vufukP4QWG/s640/energy+chart.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: "arial" , sans-serif;"><b><i>BHI as a dynamic measure of the response of the body to stress.<span style="mso-spacerun: yes;"> </span></i></b></span><i style="mso-bidi-font-style: normal;"><span style="font-family: "arial" , sans-serif;">In this scheme, healthy subjects have a high BHI with a high bioenergetic reserve capacity, high ATP-linked respiration and low proton leak.<span style="mso-spacerun: yes;"> T</span>he population of mitochondria is maintained by regenerative biogenesis.<span style="mso-spacerun: yes;"> </span>During normal metabolism, a sub-healthy mitochondrial population, still capable of meeting the energetic demand of the cell, </span></i><i style="mso-bidi-font-style: normal;"><span style="font-family: "arial" , sans-serif;">accumulates functional defects, which can be repaired or turned over by mitophagy.<span style="mso-spacerun: yes;"> </span>Chronic metabolic stress induces damage in the mitochondrial respiratory machinery by progressively decreasing mitochondrial function. This manifests as low ATP linked respiration, low reserve capacity and high non-mitochondrial (e.g. ROS generation) respiration. These bioenergetically inefficient, damaged mitochondria exhibit increased proton leak and require higher levels of ATP for maintaining organelle integrity, which increases the basal oxygen consumption.<span style="mso-spacerun: yes;"> </span>In addition, chronic metabolic stress also promotes mitochondrial superoxide generation leading to increased oxidative stress, which can amplify mitochondrial damage, the population of unhealthy mitochondria and basal cellular energy requirements. The persistence of unhealthy mitochondria damages the mitochondrial DNA (mtDNA), which impairs the integrity of the biogenesis program, leading to a progressive deterioration in bioenergetic function, which we propose can be identified by changes in different parameters of the bioenergetics profile and decreasing BHI.<o:p></o:p></span></i></span></td></tr>
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<h2>
How He Got Involved in SEID Research</h2>
Recent discoveries in our disease have brought our scientists to Darley-Usmar and to mitochondrial function testing, more so than his coming to our field. <br />
<br />
I have heard of some theories over the decades in relation to SEID and mitochondria function and the NO/ONOO cycle (increase in nitric oxide and peroxynitrite, causing oxidative stress). But mitochondria-related studies have taken over much of the research interest of our disease in the last two years. This matches the interest of mitochondrial research in general, in other diseases. <br />
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His first contact from someone from the SEID field was <a href="http://www.nova.edu/nim/2015-patient-conference/jon-kaiser.html" target="_blank">Dr. Jon Kaiser</a>, with <a href="http://www.kpaxpharmaceuticals.com/about-us/" target="_blank">K Pax</a>, who just called him up one day. But then, researchers from Nevada, <a href="http://www.unr.edu/molecular-biosciences/faculty/ruben-dagda" target="_blank">Ruben Dagda, Phd</a>, and <a href="http://med.unr.edu/directory/isabel-silvestre" target="_blank">Isabel Silvestre, Phd</a>, asked him to help set up a study they want to do on bioenergetic health in natural killer cells in SEID patients. He plans to visit the research team there this summer.<br />
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This networking and camaraderie is often how joint projects come about; it’s word of mouth. “They took the time and effort to try to understand what I was saying about the bionergetic health index,” he said. And they explained their theory to him.<br />
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The Nevada-based study, titled “<a href="http://solvecfs.org/the-bioenergetic-health-index-of-nk-cells-as-a-diagnostic-tool-for-chronic-fatigue-syndrome/" target="_blank">The Bioenergetic Health Index of NK Cells as a Diagnostic Test for Chronic Fatigue Syndrome</a>,” has been funded by the Solve ME/CFS Initiative Ramsey Awards. The abstract points out, “Mitochondrial dysfunction has been reported in CFS. However, the extent by which the metabolic profiles of lymphocytes [natural killer cells] is associated with immune dysfunction remains to be elucidated.” <br />
<br />
Previous research, going back to the late 1980s, has revealed that <a href="http://www.sciencedirect.com/science/article/pii/S0165572812002536" target="_blank">NK cells don’t function well in this disease and seem to die before reaching maturity</a>. <br />
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The potential impact of this study is that it may lead to a clinically useful test and may contribute to the knowledge of the disease that may point to a target for a treatment clinical trial.<br />
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<h2>
How Useful Could a Blood Test for BHI Be?</h2>
<ul>
<li>When you have an intervention to test, this bioenergetic health index can measure whether that intervention is causing a molecular change, thus reducing any fatigue treatment placebo effect corrupting study results. “Lots and lots of people take supplements [for energy], which may or may not have any effect on our biology,” said Darley-Usmar. So it can be measured molecularly whether any of these supplements actually enhance the cellular energy-production capacity.</li>
<li>If you know the particular mechanism of the diminished cellular energy production in a certain condition, then you can possibly figure out what intervention might improve it. So the test may point to what treatments ought to be tried for different conditions.</li>
<li>It may be used to predict the outcome of a treatment for some diseases. “If your metabolism is stronger before you have a clinical procedure or therapeutic or intervention, then the chance of your outcome being better goes up,” said Darley-Usmar. Bioenergetic health testing may reveal why some do better on treatments, while others don’t do as well.</li>
<li>It can be used to see the differing bioenergy health of different cells within one body. For example, a person could have high muscle energy capacity and not feel fatigue, but the immune system energy capacity could be diminished, contributing to a disease. Darley-Usmar already did this with heart valve replacement patients. The cells around the heart were diminished in their bioenergetic health, but the cells in the blood taken from the arm were not.</li>
<li>In a clinical setting, it can validate the patient complaint of fatigue as being real and objectively measurable and may replace the more painful test of muscle biopsies.</li>
<li>It may identify those with “fatigue syndromes” that have mitochondrial dysfunction and separate them from those who may have another cause for their fatigue. To achieve this, mitochondrial studies with many SEID subjects are needed.</li>
</ul>
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<h2>
Recognition of Role of Mitochondrial Dysfunctions in Diseases</h2>
There are a few mitochondrial disease clinicians. But the problem is having clinical tests, Darley-Usmar said. But that is improving. “We now know the mitochondria can change the genes in the nucleus pretty dramatically,” he said. “The idea that mitochondria are part of the problem in cardiovascular disease, in diabetes, in neurodegenerative disease is completely accepted at the research level.” But all of this will only get into clinical care when there is a test and a treatment for these mitochondrial dysfunctions. He said there are some interesting drugs “coming into the mitochondrial space.”<br />
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<h2>
Not Yet Connected to Other SEID Researchers at UAB</h2>
Darley-Usmar has not yet connected with the two other SEID researchers at UAB: <a href="http://www.norc.uab.edu/people/kfontaine" target="_blank">Kevin Fontaine, PhD, </a>who is working with <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/0002651/peter-rowe" target="_blank">Dr. Peter Rowe</a>; and <a href="https://www.uab.edu/cas/psychology/people/primary-faculty-directory/jarred-younger" target="_blank">Jarred Younger, PhD</a>, who is researching SEID and fibromyalgia from the neuroinflammation angle. <br />
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But, Darley-Usmar is collaborating with the <a href="https://www.uab.edu/medicine/genetics/patient-care/clinical-services/undiagnosed-diseases" target="_blank">UAB Undiagnosed Disease Program</a>, and they have people that come in with “fatigue syndromes.” However, to do a study on SEID, he would need to have a clinical connection to patients with SEID. <br />
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He is open to helping other researchers of this disease. He described the post-exertional malaise (activity-induced symptom exacerbation) as “a powerful paradigm” for doing a study. He said the patient can be her own baseline for comparison of BHI on good days and bad days. <br />
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In closing of our interview, Darley-Usmar showed me flier for <a href="http://www.umdf.org/symposium/southeast/" target="_blank">a symposium in Birmingham</a> that patients can attend if they are interested in mitochondria and bioenergetics. I don't know if I'll make it. But I'll check into it.<br />
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Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com6tag:blogger.com,1999:blog-8378332272337029621.post-21086948589668247322017-02-08T16:00:00.000-06:002017-02-08T19:32:40.601-06:00IOM Implementation: What's Missing (besides the name change)<span style="font-family: "arial" , "helvetica" , sans-serif;">In early 2015, the Institute of Medicine put out their long feared report on ME/CFS. They searched through the research, and a committee made of experts (both in the disease and in other pertinent fields) made some suggestions that are intended to influence US health agencies.</span><br />
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">They recommended a new clinical criteria.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">They recommended a new name.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">They recommended a new diagnostic code with the new name.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">They recommended more research funding.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">They recommended a health provider education/dissemination campaign.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">They recommended the government set up a screen/diagnostic toolkit for clinicians.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">They recommended that the criteria be reviewed again in 5 years for any changes science my dictate are needed.</span></li>
</ul>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span> <span style="font-family: "arial" , "helvetica" , sans-serif;">The CDC and NIH have started work on implementing many of these recommendations. The CDC website is expected to be changed soon to have the new criteria. They have a workgroup to help them in the implementation. This workgroup includes patients, SEID experts and people from medical professional organizations. The CDC is also continuing their medical school education project as well as speaking at conferences about the disease.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The NIH is doing an in-house study looking closely at the immune system in this disease and just announced funding for a network of special research centers, including data-sharing. This structure will increase the credibility and hopefully the amount of research in our disease.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">But if you see the list above, you'll see some of the recommendations aren't being talked about any more or are not receiving any action. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Of course, there's the name change, which I support, but the Chronic Fatigue Syndrome Advisory Committee has not recommended to adopt. There was a push in the last CFSAC to start the process for the update of the criteria. I'm not concerned about that at this time. I think it's too early. Let's start talking about that in 2018.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">To my knowledge, no one has submitted a new diagnostic code for the systemic exertion intolerance disease. And I also support that being done asap, with the new name.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The IOM Committee created a physician's guide. But we need a toolkit, as is recommended. Likely this will come out of the CDC's efforts.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-pAAOHzgX2bD0V8MjpDeXcqCPrTLkxJOmeqvPia80UDasIHJIG1kpW9HQgfyvrclP7Y6bOie2uHZ-_l9cW0_kzInOwGLlIp2V0GaI-6zwbDxoh5Ts_4bfpXUj6jNhkmjSyz5ILWlzR0BO/s1600/Aviary+Photo_131310624123374714.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-pAAOHzgX2bD0V8MjpDeXcqCPrTLkxJOmeqvPia80UDasIHJIG1kpW9HQgfyvrclP7Y6bOie2uHZ-_l9cW0_kzInOwGLlIp2V0GaI-6zwbDxoh5Ts_4bfpXUj6jNhkmjSyz5ILWlzR0BO/s400/Aviary+Photo_131310624123374714.png" width="400" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">And likely the toolkit will be useful in medical provider education. The IOM gave much detail on opportunities of dissemination and education. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">In the text, one of the suggestions for getting this done is this:</span><br />
<span style="font-family: "arial";"></span><br />
<span style="color: #38761d; font-family: "arial" , "helvetica" , sans-serif;">Designation of an HHS Point Person HHS should consider appointing an individual to oversee the dissemination of the new diagnostic criteria nationwide to health care professionals (i.e., a “SEID czar” within the department). This person should have access to the necessary resources and the authority to implement the dissemination plans for the new criteria and address any questions or concerns that arise. Having such an individual in place will also help demonstrate HHS’s responsiveness to this issue.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I've not heard anyone talking about this. Is this going to come later? Or have we all forgotten it? I would love to see a SEID czar who can coordinate and be a driving force for all government SEID things.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> It would be someone who's job is to do outreach to increase public and medical provider knowledge of the disease. Everyone else in the government involved in SEID has other work, also.</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">One of the biggest problems we have is lack of knowledgeable clinical care and misperceptions among medical providers and the public.</span></div>
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<span style="font-family: "arial";"></span> </div>
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<span style="font-family: "arial";">I think it would go much faster and be more effective if the advertising campaign includes a new name and a new code (basically a rebranding). Doing an education campaign about a new criteria but not a new name just brings to the new criteria the baggage from the current and bad name. Note what the IOM Committee said:</span><br />
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<span style="font-family: "arial";"></span><br />
<span style="font-family: "arial";"></span><br />
<span style="font-family: "arial";">But even if I can't get the new name and code, is anyone going to follow the suggestion of having a czar to do lead the campaign?</span></div>
Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com0tag:blogger.com,1999:blog-8378332272337029621.post-36106313296897293632017-01-18T13:01:00.001-06:002017-01-20T17:36:52.024-06:00It's the Name, the NAME, THE NAME!<span style="font-family: "arial" , "helvetica" , sans-serif;">So it's been a bit frustrating and disheartening for me due to personal circumstances, lately. I was looking to the January Chronic Fatigue Syndrome Advisory Committee meeting to be a justified distraction for a couple of days. But, it brought on more frustration, I hate to say. So, I must purge. And this is the place for me to do so. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">On Friday, they revisited a previous recommendation because the committee did not get the response they had hoped for from the secretary/government agency. They were discussing what to do, reword? resend as is? don't sent again? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The recommendation is:</span><br />
<div style="text-align: left;">
<span style="color: #38761d; font-family: "arial" , "helvetica" , sans-serif;">The IOM has acknowledged and identified a distinct medical condition involving systemic exertion intolerance with PEM and universal core criteria. CFSAC recommends that the disease identified by the IOM be clearly distinguished from other causes of chronic fatigue, such as conditions described by Fukuda et al, 2005 Reeves, Oxford and other forms of chronic fatigue which include patients that do not meet the IOM core criteria.</span></div>
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</div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The response from the CDC was: </span></div>
<div style="text-align: left;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #38761d;">The IOM diagnostic criteria will be used as the basis for clinical guidance. Other case definitions may be important to clarify the historical use. . . . Changes in ICD-10-CM codes are made through proposals to the ICD-10-CM Coordination and Maintenance Committee.</span> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"></span> </div>
<div style="text-align: left;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">The committee wasn't happy with that and wanted to know for sure that Fukuda criteria patients and other people with chronic fatigue will be distinguished from those who fit the IOM criteria. And they wanted to know how this will be done.</span></div>
<div style="text-align: left;">
</div>
<div style="text-align: left;">
<span style="font-family: "arial";">How indeed can we distinguish those on the CDC website and in conversation/text, and, for that matter, in coding those who have chronic fatigue from those who have the disease of exertion intolerance? Finally, Donna Pearson said it pointedly (paraphrased) "This disease is different from Fukuda or Oxford or chronic fatigue in general. It's distinguishable by exertion intolerance. How can we make it clear that the <strong>disease</strong> with <strong>exertion intolerance</strong> is different?"</span></div>
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</div>
<div style="text-align: left;">
<span style="font-family: "arial";">Uhh, maybe call it something different? I know! I know! I know! Let's call it "<strong>exertion intolerance</strong> <strong>disease</strong>." (This post may be dripping with sarcasm. I've had my fill lately.) </span></div>
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</div>
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<span style="font-family: "arial";">Notice what I found is the definition of (purpose for a) "name":</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Finally, in the discussion, someone noted that the IOM committee was suggesting the "systemic exertion intolerance disease" name as a way of distinguishing those with the exertion intolerance of the IOM criteria from those with chronic fatigue (with or without other symptoms). </span></div>
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<span style="font-family: "arial";">But people may say: "Why don't we just call it 'ME.'" Well, the CFSAC did not accept that recommendation, either. And for good reason. But one main reason I can think of not calling the exertion intolerance disease "myalgic encephalomyelitis" is because myalgia is not in the criteria. Why would you call a disease by pain if pain is not one of the symptoms required? And yes, I know most of us have pain (although I didn't for the first three years). But most of us have fibromyalgia, also. Is the pain of the exertion intolerance disease or fibromyalgia or both? Either way, the main thing we say distinguishes this disease is not reflected in the "ME" name. And nothing is in the criteria about testing for inflammation of the brain by spinal taps (encephalomyelitis). It's not the right name. It doesn't identify the main distinguishing feature: exertion intolerance.</span></div>
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<span style="font-family: "arial";">The CDC said the website changes will emphasize the new criteria (with exertion intolerance required) but say Fukuda was a formerly used criteria. I absolutely agree with that. Fukuda was intended to define those with our disease, but did so imperfectly. It's now obsolete for diagnosing in a clinical setting. The person either has the IOM criteria disease of exertion intolerance or they have another disease causing the fatigue or they have idiopathic fatigue. No matter what other symptoms they have, if they don't have exertion intolerance, they don't have this disease, the disease that Fukuda tried to identify, but the IOM criteria does better.<br /><br />Did we really think that the IOM committee was recommending we split up all these symptoms into 3 different disease, each with a separate designation on the CDC website? And since the CFSAC rejected the IOM recommended name? What would we call these three different diseases? </span></div>
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<span style="font-family: "arial";">ME for one? CFS-with PEM for the other? and CFS-Fukuda for the third? </span></div>
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<span style="font-family: "arial";">Really? </span></div>
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<span style="font-family: "arial";">Or maybe we would have ME/CFS-International Criteria, ME/CFS IOM Criteria, ME/CFS Fukuda Criteria, and idiopathic chronic fatigue? And would there be different treatments? </span></div>
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<span style="font-family: "arial";">This is ludicrous. It adds no clarity for clinicians. They will have to learn three new diseases instead of one. (Taking the assumption most don't even know the disease criteria we had before the IOM.)</span></div>
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<span style="font-family: "arial";">Let's keep it simple: You either have the IOM criteria with exertion intolerance or you have another fatiguing disease or you have chronic fatigue (possibly with other symptoms) where the disease or cause is not evident yet. Forget Fukuda. It's yesterday. It's ok for historical reference, but we've moved on to better. We know the disease better. It's not a different disease. It's an imperfect attempt to describe our disease. But it has been exposed as faulty.<br /><br />(I know the IOM committee said they were not intending to replace Fukuda or other criteria, but they contradicted themselves where they said the names of the other criteria, "ME" and "CFS" are inappropriate).</span></div>
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<span style="font-family: "arial";">Another way to distinguish the exertion intolerance disease from idiopathic chronic fatigue is in the coding. Please, will the IACFS/ME or some other medical professional organization submit a proposal to the CDC statistics department to put in a systemic exertion intolerance disease code so we can do away with "ME" and "ME/CFS" and "CFS" being used to describe the disease that is distinguished not by provable neuroinflammation or pain, distinguished not by chronic fatigue, but distinguished by the <strong>exertion intolerance</strong>.</span></div>
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Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com3tag:blogger.com,1999:blog-8378332272337029621.post-51196212259389145912017-01-09T00:31:00.000-06:002017-01-13T21:00:49.815-06:00Walitt Invited Shorter and Nath Approved Him<span style="font-family: "arial" , "helvetica" , sans-serif;">On November 9, Dr. Edward Shorter of Toronto gave a presentation to NIH officials on the history of ME/CFS. The fact this was going to occur was not shared in the NIH conference call with patients just 7 days before. It was quite a surprise considering the other NIH activities related to ME/CFS that was shared. </span><br />
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<a href="https://irp.nih.gov/pi/avindra-nath" target="_blank"><span style="font-family: "arial" , "helvetica" , sans-serif;">Dr. Avindra Nath</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;">, the NIH official leading the new clinical study on ME/CFS, was there on that patient conference call, coming in late. In fact, </span><a href="https://www.nih.gov/nih-me/cfs-advocacy-call-0" target="_blank"><span style="font-family: "arial" , "helvetica" , sans-serif;">you can listen to it or read the transcript here</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;">.</span> <br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When patients found out about this from someone not at the NIH, advocates sent out the alarm. One of them was Jennie Spotila. She </span><a href="http://occupyme.net/2016/11/03/an-open-letter-to-dr-koroshetz/" target="_blank"><span style="font-family: "arial" , "helvetica" , sans-serif;">wrote a blog</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> and sent a letter to the leader of the National Institute of Neurological Diseases and Strokes (Dr. Walter Koroshetz) because Shorter's 2015 comments about ME/CFS were disparaging of the patients and discredited the biological basis for the disease (along with a book he wrote about it in the '90s).</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I too wrote a letter. My letter focused on why the NIH officials did not reveal this upcoming ME/CFS talk at NIH to the ME/CFS patients. This withholding of information about the NIH activities on ME/CFS is a threat to the trust NIH is supposedly trying to build among ME/CFS patients.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Koreshetz, </span><a href="http://occupyme.net/2016/11/10/the-proverbial-olive-branch/" target="_blank"><span style="font-family: "arial" , "helvetica" , sans-serif;">sent a response.</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Discussion among patients online during that time was about who invited Shorter. With assumptions being made, I asked if anyone had asked the NIH who did it. No one had. My journalism history and sense of fairness make me find out, not assume. But I did not think it that important at the time.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Then I heard what Shorter said during his presentation. And that just got my goat. After getting past some other more pressing duties, I decided to pursue finding out who at the NIH invited Shorter and who approved it. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">After asking other prominent advocates if they had pursued finding out or if they planned to, I saw it was up to me if I wanted to find out. I could have filed a FOIA request, but I thought maybe I could just ask someone who understands the importance of communications at the NIH and avoid the long process of FOIA. I contacted the Communications Department at the National Institute of Nursing Research, which is where patients thought the invitation started and was approved.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And, they responded with the following:</span><br />
<span style="font-size: 12pt;"><em><span style="color: black; font-family: "calibri" , sans-serif;">“The recommendation to invite Dr. Shorter to speak at the NIH last month was made by Dr. Brian Walitt of the </span><span style="color: black; font-family: "calibri" , sans-serif;"><span style="background-color: white;">NINR</span></span></em><span style="color: black; font-family: "calibri" , sans-serif;"><em>. The recommendation was approved by Dr. Avindra Nath, the Director of Clinical Research at the National Institute of Neurological Disorders and Stroke Division of Intramural Research."</em> </span></span><br />
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<span style="font-size: 12pt;"><span style="font-family: "calibri";"><span style="font-family: "arial" , "helvetica" , sans-serif;">This caused me to send an email to Dr. Nath and Dr. Walitt. First, I reminded them of some of Shorter's comments about our disease:</span></span></span><br />
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<span style="font-size: 12pt;"><span style="font-family: "calibri";"><span style="font-family: "times new roman";"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: black; font-family: "symbol"; font-size: x-small;"><span style="font-size: 10pt;">·</span></span><span style="color: black; font-family: "symbol";"> </span><span style="color: #333333; font-family: "georgia" , serif; font-size: x-small;"><span style="font-size: 11pt;">The IOM report was an “embarrassment . . . valueless, junk science at its worst.”</span></span></span></span></span></span></span></div>
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<span style="font-size: 12pt;"><span style="font-family: "calibri";"><span style="font-family: "times new roman";"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: black; font-family: "symbol"; font-size: x-small;"><span style="font-size: 10pt;">·</span></span><span style="color: black; font-family: "symbol";"> </span><span style="color: black; font-family: "georgia" , serif; font-size: x-small;"><span lang="en" style="font-size: 11pt;">“Nothing has changed since then [1992] in scientific terms. </span></span><span style="color: #333333; font-family: "georgia" , serif; font-size: x-small;"><span style="font-size: 11pt;">There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be.”</span></span></span></span></span></span></span></div>
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<span style="font-size: 12pt;"><span style="font-family: "calibri";"><span style="font-family: "times new roman";"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: black; font-family: "symbol"; font-size: x-small;"><span style="font-size: 10pt;">·</span></span><span style="color: black; font-family: "symbol";"> </span><span style="color: #333333; font-family: "georgia" , serif; font-size: x-small;"><span style="font-size: 11pt;">“[W]hat many of these patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.”</span></span></span></span></span></span></span></div>
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<span style="font-size: 12pt;"><span style="font-family: "calibri";"><span style="font-family: "times new roman";"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: black; font-family: "symbol"; font-size: x-small;"><span style="font-size: 10pt;">·</span></span><span style="color: black; font-family: "symbol";"> </span><span style="color: #333333; font-family: "georgia" , serif; font-size: x-small;"><span style="font-size: 11pt;">“[I]n the several [IOM] public hearings the CFSers appeared in mass to pour out their tales of woe.”</span></span></span></span></span></span></span></div>
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<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: black; font-family: "symbol"; font-size: x-small;"><span style="font-size: 10pt;">·</span></span><span style="color: black; font-family: "symbol";"> </span><span style="color: #333333; font-family: "georgia" , serif; font-size: x-small;"><span style="font-size: 11pt;">The public hearings were a circus, with moaning and groaning victims right and left.”</span></span></span></span></div>
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<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: black; font-family: "symbol"; font-size: x-small;"><span style="font-size: 10pt;">·</span></span><span style="color: black; font-family: "symbol";"> </span><span style="color: #333333; font-family: "georgia" , serif; font-size: x-small;"><span style="font-size: 11pt;">“</span></span><span style="color: black; font-family: "georgia" , serif; font-size: x-small;"><span lang="en" style="font-size: 11pt;">What is required to convert these inchoate and nonspecific symptoms into an illness is an act of belief, a psychic epidemic, in other words. And my feeling as a historian is that this is what we are now dealing with in the ME/CFS movement.”</span></span></span></span></div>
</span> </span></span><span style="font-size: 12pt;"><span style="font-family: "calibri";"><span style="font-family: "times new roman";"><span style="font-family: "arial" , "helvetica" , sans-serif;">And I then asked Dr. Nath other questions. (Dr. Walitt was sent similar, some the same, questions):</span> </span></span></span><br />
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<span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri";">1. Did you, as the NINR Communications Department says, approve Dr. Edward Shorter as a speaker on the topic of the history of ME/CFS to be given at an NIH facility to NIH personnel?</span></span></div>
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<span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri";">2. If you did approve this, did you know at the time of his 2015 negative and dismissive comments about patients and his theory of ME/CFS being a “psychic epidemic”?</span></span></div>
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<span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri";">3. Since you were on the phone call with patients just before this presentation (with one of the call’s goals to create more trust in the actions NIH is taking to study ME/CFS and keep patients informed), why did you not tell patients of this imminent presentation since it was on the disease the patients have? </span></span></div>
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<span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri";">4. Shorter wrote a 1992 book and has written columns with his theory of ME/CFS. And his bio says he is an expert on psychiatry history, not ME/CFS. If you did approve Shorter as a speaker on the topic of ME/CFS history, what clinical or research experience in ME/CFS did he have that convinced you he had scientific, evidence-based information that would benefit scientists at the NIH?</span></span></div>
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<span style="color: #38761d; font-family: "calibri";">5. Did you attend his presentation?</span></div>
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<span style="color: #38761d;"><span style="font-family: "calibri";">6. If </span><span style="font-family: "calibri" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;">you did attend it, did he acknowledge the biological abnormalities that have been accepted by clinical experts and the large majority of researchers in the disease (such as diminished aerobic capacity-especially within 24-72 hours of an exercise test, metabolic abnormalities, immune system abnormalities, neurocognitive deficits-especially in multi-tasking and executive function, endocrine dysfunctions-such as low and evening peak of cortisol, numerous brain abnormalities, etc.)? Or did he again promote a psychosocial theory for most of those who are diagnosed with ME/CFS? </span></span></span></div>
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<span style="color: #38761d; font-family: "calibri";">7. Do you agree with Shorter’s primary thesis (as of 2015) of ME/CFS being a psychic epidemic or a psychosocial condition instead of an organic disease? </span></div>
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<span style="color: #38761d; font-family: "calibri";">8. Which parts of his presentation do you think might contribute to your team’s better understanding of ME/CFS?</span></div>
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<span style="color: #38761d; font-family: "calibri";">9. In this process, looking back at how this event happened, would you have done anything differently based on what you now know and seeing the effect it had on patients and their attitude toward the work NIH is doing in ME/CFS?</span></div>
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<span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;">After not getting a response in a week, I contacted the NINDS Communications Department to see if I should wait (holidays may have distracted them). Marian Emr responded to me confirming the information sent to me from the NINR Communications Department and sent me a previous response to patients. She said it would answer some of my questions. This is that earlier response:</span></span><br />
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<span style="font-size: 12pt;"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "book antiqua" , serif; font-size: x-small;"><span style="font-size: 11pt;"></span></span></span></span></span><br />
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<span style="font-size: 12pt;"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "book antiqua" , serif; font-size: x-small;"><span style="font-size: 11pt;"><span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em>Dear members of the ME/CFS community,</em></span></span></span></span></span></span></span></span></span></div>
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<span style="font-size: 12pt;"><span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em>You have written to express concern about the NIH lecture by Edward Shorter that took place on November 9th. Thank you for sending us your thoughts. </em></span></span></span></span></span></div>
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<span style="font-size: 12pt;"><span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em> </em></span></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em>Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group, which means that it does not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease. Given the professional and learning environment that NIH promotes, dozens of people come each week to the NIH to exchange ideas with NIH scientists; the scientists who attend these lectures frequently challenge or disagree with the speakers’ ideas. In scientific circles, disagreement with what is said is often more scientifically productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward. The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS and to improve the lives of people who have been suffering for years, and even decades. Comments made in a seminar will not undermine the progress of science at NIH. </em></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em> </em></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><em><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: x-small;"><span style="font-size: 11pt;">Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2</span></span><sup>nd</sup><span style="font-size: x-small;"><span style="font-size: 11pt;">. The telebriefing was intended to discuss the efforts of the Trans-NIH ME/CFS Working Group and the progress made in initiating the NIH Intramural research clinical study. The lecture was not part of those efforts.</span></span></span></em></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em> </em></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em>The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician. The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team. It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.</em></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em>Regards,</em></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em> </em></span></span></span></span></div>
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<span style="font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-size: 11pt;"><em>The Trans-NIH ME/CFS Working Group</em></span></span></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This led me to ask more questions:</span><br />
<span style="color: #b45f06;"><span style="color: #38761d;">If this is not part of effort of Trans NIH ME/CFS Working Group or the clinical study, then why does the leader for the ME/CFS clinical study in a completely different institute (NINDS) approve a suggested speaker from someone at the NINR? Wouldn't the boss within that institute (NINR) approve it if the presentation is not part of the cross agency efforts on the disease or the clinical study of that disease? Is it common for someone at the NINR to recommend a speaker to someone at the NINDS?</span> </span><br />
<span style="color: #b45f06; font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"> </span></span><br />
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<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #006fc9;"><span style="color: #38761d;">Also, if Shorter's presentation will not influence the research at NIH on ME/CFS, then was he just invited as a mental exercise in debating skills for NIH personnel?</span> </span></span></span></div>
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<span style="color: #006fc9; font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"></span></span> </div>
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<span style="color: black; font-family: inherit; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;">I also pointed out that most of my questions were not answered:</span></span></div>
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<span style="color: #006fc9; font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri" , sans-serif;">1. . . . did you [Walitt and/or Nath) know at the time the invitation was made of [Shorter's] 2015 negative and dismissive comments about patients and his theory of ME/CFS being a “psychic epidemic”?</span></span></span></span></span></div>
<span style="color: #006fc9; font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;">
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<span style="color: #006fc9; font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri" , sans-serif;">2. . . . what clinical or research experience in ME/CFS did he have that convinced you [Walitt and/or Nath] he had scientific, evidence-based information that would benefit scientists at the NIH?</span></span></span></span></span></div>
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<span style="color: #006fc9; font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #38761d; font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"> </span></span></span></span></div>
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<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri" , sans-serif;">3. Did you (Walitt and/or Nath} attend his presentation?</span></span></span></div>
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<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #b45f06; font-family: "calibri" , sans-serif;"><span style="color: #38761d;">4. . . . [In the presentation] did [Shorter} acknowledge the biological abnormalities that have been accepted by clinical experts and the large majority of researchers in the disease (such as diminished aerobic capacity-especially within 24-72 hours of an exercise test, metabolic abnormalities, immune system abnormalities, neurocognitive deficits-especially in multi-tasking and executive function, endocrine dysfunctions-such as low and evening peak of cortisol, numerous brain abnormalities, etc.)? Or did he again promote a psychosocial theory for most of those who are diagnosed with </span><span style="color: #38761d;">ME/CFS? </span></span></span></span></div>
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<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri" , sans-serif;">5. Do you [Walitt and/or Nath] agree with Shorter’s primary thesis (as of 2015) of ME/CFS being a psychic epidemic or a psychosocial condition instead of an organic disease? </span></span></span></div>
<div style="margin: 0px 0px 8pt;">
<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri" , sans-serif;">6. Which parts of his presentation do you [Walitt and/or Nath] think might contribute to your team’s better understanding of ME/CFS?</span></span></span></div>
<div style="margin: 0px 0px 8pt;">
<span style="font-family: "times new roman" , serif; font-size: small;"><span style="font-size: 12pt;"><span style="color: #38761d; font-family: "calibri" , sans-serif;">7. In this process, looking back at how this event happened, would you [Walitt and/or Nath] have done anything differently based on what you now know and seeing the effect it had on patients and their attitude toward the work NIH is doing in ME/CFS?</span></span></span></div>
</span></span><br /></div>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;">I asked if I should expect an answer to these questions. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;">I was told to use the previous response. (That means no.)</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;"></span><br />
<span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;">In emailing Ms. Emr, I explained why inviting Shorter is so confusing to patients, especially <span style="font-family: Arial, Helvetica, sans-serif;">in light of the new effort we've seen at the NIH in relation to ME/CFS:</span></span><span style="font-family: Arial, Helvetica, sans-serif;"> </span></span><br />
<span style="font-size: 12pt;"><span style="font-size: 12pt;"><span style="color: #006fc9;"><span style="color: #38761d; font-family: Arial, Helvetica, sans-serif;">To many of us patients, Shorter's theory is akin to having someone say that MS is female hysterical paralysis (a viewpoint common in the early 19th century but which has been disproven by science). I'm sure if MS patients knew the NIH invited someone to speak to scientists promoting that outdated and unscientific theory, and the person had not actually published a peer review paper on MS, it would be very disconcerting and confusing to MS patients. It's not a differing view of scientific theories that can be debated. It's not like questioning whether EBV plays a role in the development of MS, which could be debated by scientists at this point. The theory of MS being female hysterical paralysis has no scientific basis, so why would someone be presenting that MS is female hysterical paralysis to scientists for scientific debate? Where can progress come from such a presentation?</span> </span></span></span><br />
<span style="font-size: 12pt;"><span style="font-family: "calibri";"></span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;"><strong>What Now? </strong></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;">I will let everyone draw their own conclusions on what this new information, the responses, and refusal to respond means. But, I do recommend that on the next (and all future) NIH call(s) with patients that the patients start off by asking, "Does any of the NIH officials on this call know of a presentation on ME/CFS that will be given in the next 6 months at any of the NIH facilities or arranged by someone at NIH?" They won't tell us on their own. And when asked why they didn't tell us, they'll say it wasn't the topic of the call, even though they mention a whole bunch of other stuff they are doing for ME/CFS, including attending conferences. And even though the person who approved the presentation is there on the call and is the leader of the special interest group doing the clinical study that is the topic of <span style="font-family: "arial" , "helvetica" , sans-serif;">the call.</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;"><a href="https://www.nih.gov/mecfs/events" target="_blank">The next call for patients is February 1. </a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12pt;"></span><br />
<span style="font-size: 12pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I don't want this to detract from the positive actions NIH is taking for our disease. But clearly you have to ask specifically about speakers they host because you can't trust they will tell you things that we want to know about their ME/CFS activity. And we know Walitt and Nath thought Shorter was an appropriate speaker to scientists on the topic of ME/CFS. We don't know if they didn't know about his disparaging comments before the invitation was made or if they knew and somehow thought he could contribute to scientific knowledge of the disease.</span> </span><span style="font-size: 12pt;"><br />
</span>Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com6tag:blogger.com,1999:blog-8378332272337029621.post-26719189446175115412016-11-24T15:03:00.002-06:002016-11-24T15:03:38.262-06:00Be Careful; But SEID Will Still Make You Pay for that VacationLeading up to the trip, I couldn't know just how it would be. Would I be debilitated and have a headache and nausea right on the day of the flight? And would I end up with days in the bed, while my husband saw the sights of the tropical island?<br />
<br />
Life with systemic exertion intolerance disease (SEID) means you never know just how much function, how much health, you'll have. Yet, do we just do nothing at home? Never travel? Live nothing of a life year after year?<br />
<br />
Most, if they have a mild or moderate case, know that they must find any morsel of experience they can tolerate, as things may never get better and possibly will get worse.<br />
<br />
So, my husband and I scheduled and saved for our once-a-year vacation, this time to Key West. Knowing my limitations, I tried to add some strategies to lessen the "exertion intolerance" effects:<br />
<ul>
<li>I added a couple days to the trip so I would not be trying to see it all and doing too much</li>
<li>I arranged for wheelchair transport in connecting to the second flight, both coming and going, reducing the walking in the very big Atlanta airport.</li>
<li>I scheduled at least 3 hours of rest (either lying down in the pool or in the bed) every day.</li>
<li>My husband pushed me in a wheelchair at the museums (they have them there).</li>
<li>I took ibuprofen just about the whole time.</li>
<li>Stayed at a motel with four restaurants within 2 blocks, one across the street.</li>
</ul>
But still, would it be enough? A SEID patient never knows when the crash comes, and no activity is possible except going to the bathroom. Would it hit at this once-a-year opportunity for an enjoyable experience in a tropical island?<br />
<br />
I was surprised at my ability. About the third day of the trip, in the evening, I had the severe mental fatigue. I couldn't do math, as in figuring a tip, was irritable, and couldn't participate in my husband's effort to converse. But, I was back to my normal, but limited, self the next day.<br />
<br />
A little surprising to me; the turbulence on the plane caused severe nausea (without the headache that I normally get before the nausea that comes with some of the SEID crashes. Note to self: Take anti-nausea medication with me on the next plane trip.<br />
<br />
Did I get a reprieve, I wondered. Am I better than I thought? I flew home on a Tuesday. I was alert and able to do some computer work the next day. But then it hit.<br />
<br />
And, on Wednesday afternoon, I started to feel the crash come: debilitating fatigue, brain fog, feverish then chills, headache, nausea. I know it when it comes. So, no, the 6 days of function on the trip, surprisingly without a crash, did not mean I am better. How long would it last? Usually, a crash lasts 2-4 days. I just take ibuprofen and stay in bed as much as I can. <br />
<br />
It's just part of my life. I sometimes have to be absent for days at a time, waiting for the suffering to pass, which it always does, sooner or later. But this time was different. It lasted 12 days. My work (part-time freelance as a communications specialist) was piling up. But there is no pushing through from these crashes. When I try, it just prolongs and worsens the crash. I must just wait it out.<br />
<br />
Each day, I would think, maybe this is the last day of the crash. Maybe tomorrow I'll be able to sit at the desk for a few hours. When this happens, a fear comes over. Maybe I'm stuck. Maybe I will not recover this time. Maybe I will never leave the house again. Maybe what little life I had is now going to be no life.<br />
<br />
But, day 12, it started to lift. I asked my doctor: how was I able to go 6 days without a major crash from all the vacation activity? What mechanism kicks in temporarily? And then, even while I'm able to be more active without a payback for the 6 days (whereas the crash usually comes after just 1 or 2 days of being more active), what happens in the body that makes me crash when I come home and have the crash last so much longer than usual? Is there some override vacation switch in my body? Could adrenaline actually have that much effect for that long?<br />
<br />
He does know. But he said he sees similar vacation-related patterns in his other patients with this disease. <br />
<br />
Lessen learned: Don't plan any commitments for 2 weeks after a vacation. Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com0tag:blogger.com,1999:blog-8378332272337029621.post-63087775990949771152016-11-05T22:50:00.000-05:002016-11-06T11:37:07.133-06:00It's not the Scandal. It's the Cover-up<i>The following is an email letter I sent to Dr. Walter Koroshetz, director of the NINDS. I copied Dr. Vicky Wittemore and Dr. Avindra Nath.</i><br />
<i></i><br />
The history of NIH and ME/CFS has not been good: dentists on grant review panels, continued excuses to why no effort has been made to make filing ME/CFS grants attractive to researchers (just complaining that not enough researchers are filing good grants and telling patients they need to get the researchers to file grant applications), and having reviewers say physiologically-based studies are not worthy of funding because they believe ME/CFS is not physiological. These actions, over decades, made the patients lose confidence and trust in the NIH's mission being applied fairly in the case of ME/CFS. Contention developed. <br />
<br />
Recent activity at the NIH made us (I am a patient) think maybe a real change is happening at the NIH, that better research and more effort is being made. I understand that when a mistake was made in the information of the criteria to be used in the new ME/CFS intramural study, you and Dr. Nath found out quickly that ME/CFS patients especially watchful of government institution activities, especially in research. We've been harmed by the past bias and ignorance having a greater influence over what is studied, whose studies are funded, what theories of the disease are funded, and how the studies are done. This is similar to what happened with the AIDS advocates. The patients had to get involved and even help direct the NIH to get the right kind of research done.<br />
<br />
After the mistake of the criteria information, a decision was made to have phone calls informing patients of the NIH activities concerning this disease. The most recent one was last week. I was not able to attend that call. But I have spoken to those who did. In that call, no one said the NIH was hosting a speaker (Edward Shorter) on the history of the disease, a speaker whose published opinions of the disease are rejected by the research findings of the last 30 years and scientists who have actually studied the patients. His opinions have no basis in evidence and are antiquated (not to mention hurtful to patients). <br />
<br />
Yet, just the next day after that "keep the patients informed" call, we find out this individual is a planned speaker at the NIH, somehow considered to offer something of value to understanding the disease that he doesn't believe is a real disease. <br />
<br />
So I ask you:<br />
Why was this speaker event (topic of history of ME/CFS) not revealed to the ME/CFS patients in the call?<br />
Did any of the NIH personnel involved in the "keep patients informed" call know of this speaking event? If not, why not?<br />
If anyone at the NIH involved in the "keep patients informed" call knew of this speaking event, who knew and who decided to hide this information from patients and why?<br />
<br />
Having this man speak is either revealing someone at the NIH failing to do due diligence in vetting speakers or having terrible misjudgment of what makes an appropriate disease expert or worse, someone at NIH actually believes such a man's offensive and unfounded opinions can offer anything to a scientific-based understanding of the disease. The patients have a right to know who made this decision and why.<br />
<br />
But, there is a greater concern. Not revealing this event in a phone call that is intended to keep patients informed looks like intentionally misleading the patients by pretending to be transparent, while purposefully hiding information from the patients. Sadly, this just brings back mistrust in the NIH as it relates to this disease. The effort in these calls to increase trust and confidence has just failed and instead is another example of ineptitude or NIH research programs for ME/CFS being led by NIH individuals who are dismissive of legitimate patient concerns and right to know and possibly NIH individuals with continued bias instead of true scientists who pursue truth based on evidence in the research findings.<br />
<br />
If you want to gain ME/CFS patient trust again, a full explanation, a reckoning, is a must. You must answer the questions I asked above. Transparency brings trust. To make patients have to again file a FOI request to find out this information will not be good for building trust. You must go way overboard to be transparent to repair the damage done because patients were betrayed by listening to a call where they were led to believe the NIH was being open and honest in what it is doing in relation to the disease, but found out just a day later that the call was not open and honest information.<br />
<br />
I read the response you gave to the ME/CFS community after Jennie Spotila's letter to you. It was unclear as to whether this speaking event is still scheduled, and it did not address why this was not mentioned in the "keep patients informed" call. You must do more to make this right.<br />
<br />
Former US House Representative Tom Petri (RWI6) is quoted as saying: "As so often happens with Washington scandals, it isn't the original scandal that gets the people in the most trouble -- it's the attempted cover-up." <br />
<br />
I work in communications/marketing/PR. I recommend you get some good advice from someone in the industry who specializes in crisis communication.<br />
<br />
I hope to receive a response from you. I hope you openly respond to patients with the answers to the questions above. I hope we can gain the trusting and respectful relationship wanted by both your agency leaders (hopefully including you) and the patients. We want you to succeed in researching ME/CFS. We want to believe in the NIH. Show us that we can.Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com5tag:blogger.com,1999:blog-8378332272337029621.post-18268176269349466132016-04-23T00:47:00.001-05:002016-04-26T09:18:50.725-05:00Since It's Multiple Choice, I'll Pick SEIDThose who follow my blog know I was disheartened at the negative reaction to the Institute of Medicine's report suggesting "systemic exertion intolerance disease" be the new label for "ME/CFS." I predicted that insisting on "myalgic encephalomyelitis" will leave us with the status quo, which means the disease will continue to most commonly be known as "chronic fatigue syndrome." My prediction, thus far, has proved true.<br />
<br />
I have spoken to others who share my view and actually prefer "SEID." I said, "Shouldn't we also be advocating for what we think is best?" I was told, "Give it up. The ship has sailed. It's over. Move on. Science will solve it."<br />
<br />
This greatly disturbs me to the point of tears. We have this opportunity, and we are squandering it. How many more years must we be stuck with harmful disease names? The reason the name wasn't changed in 2003, our last opportunity, was because science would solve it. I assume those who said that expected the scientific answers would come (and thus the name would change automatically) within the next 12 years. But it didn't, and we don't know how long we will have to wait for the science from this point.<br />
<br />
Especially now that the IoM committee, which included some of our own experts, has said "myalgic encephalomyelitis" is not an appropriate name, and that the CFSAC could not come up with a majority to make a recommendation in favor of "myalgic encephalomyelitis" (and with very good reason, I might add), I see no hope that the "myalgic encephalomyelitis-only" advocacy will succeed. <br />
<br />
Why can't we learn the lessons of the past? If the doctors in main stream don't accept the label, it won't become known and used. Does anyone remember the "CFIDS" advocacy in the '90s? Multiple support groups -- heck, even the largest national nonprofit for our disease -- had it in the name of their organization. Patients insisted on using it. But did it ever go into main stream medicine? No.<br />
<br />
So, for patients, we now have a multiple choice: <br />
1. "chronic fatigue syndrome" because it's the name our doctor and public recognizes, but which we hate and misleads people about our disease?<br />
2. "myalgic encephalomyelitis" because it sounds medical, but is hard to pronounce and requires an explanation even to doctors who won't know what to do about it because they never heard of it?<br />
3. "ME/CFS" because it combines the known "CFS" with the unknown "ME," is easier to pronounce, but also requires and explanation which means "chronic fatigue syndrome" must be said in the explanation?<br />
4. "systemic exertion intolerance disease" because it takes little explanation and is medical sounding and some doctors know about it, but is not as well known.<br />
<br />
I face this question every time I see a new doctor and have to fill out those forms of what conditions I have. At this point, everyone is making their own choice. Just today, I met someone who said his wife has "CFIDS." We have one who insists on calling it "non-HIV AIDS," in addition to the options above, each of which is used by some.<br />
<br />
In this environment, there is no standard except the one I reject: "CFS." Since I reject that standard, then I am left to choose the others based on -- well -- based on whatever I want to base it on.<br />
<br />
My choice is "SEID." When I see the blank on the doctors' forms for what other condition I have, I will write in "SEID." Some doctors have heard about it. Recently, my GP had a resident who came in to interview me first. When discussing my situation, she had seen "CFS" in her medical text book, but didn't remember much about it. But she heard a presentation about "SEID" at a center focusing on finding a diagnosis for people with diseases that regular doctors have been unable to diagnose (like the one at the NIH), and it was about the IoM report and SEID. <br />
<br />
The IoM notoriety and credibility makes me feel comfortable using the term they recommended when speaking with doctors. News media at the time helped tremendously, even with getting the name known among doctors. Sorry, but it's true. When it comes to what a disease is, doctors listen to other doctors, not to patients. Patients know their experience, not what diseases are (in the mind of doctors). That's why doctors went to medical school, so they would know more than the patients about diseases, so they think they do. <br />
<br />
Yes, it does require an explanation, like "ME" and "ME/CFS" does. But the name helps a lot. When the question is asked by acquaintances or doctors, my answer is, "It's systemic exertion intolerance disease. That means the activity I'm doing today causes a system-wide dysfunction making me have severely debilitating sickness symptoms, like I have the flu. So, I have crashes that leave me bedridden for days after doing what healthy people consider normal daily activity."<br />
<br />
There it is. They understand 75% of my disease -- the impact it has and why they shouldn't tell me to see a psychiatrist or get more exercise -- in just three sentences. The name fits the description and the description is the best way I know to convey what my disease does to me and has done to my life.<br />
<br />
And what's even better. If the doctor thinks he needs to know more, he'll be Googling "systemic exertion intolerance disease" and may come across the IoM report.<br />
<br />
I have some patient friends who will think I should instead use "ME," and they have some valid points. But since we're all choosing, I will say "myalgic encephalomyelitis" does not fit my disease. Myalgias is not a major factor in my disease. I fit the criteria for fibromyalgia. But keep your fingers off my tender points, and pain is not impacting me. In fact, it's rare. Headaches and nausea are much more common in my condition. Oh, I feel the overall body aches in the crashes. The sharp pain is extremely rare. But it's the fatigue, the mental fog, the headache, and nausea that impacts me much more. Fatigue is the first and most lingering and most debilitating part of it, not body aches. And since I have fibromyalgia too, it could be debated that my myalgias are from the fibromyalgia.<br />
<br />
Additionally, I don't have any proof that I have spinal cord inflammation or brain inflammation. I've not had a spinal tap and not had a brain scan. I don't want the former and have no need of the latter to know what I have or how to treat it. So while there may be evidence to show the disease has both, I can't say for sure I have either. And, it would be logical for a doctor to ask me what evidence I have for encephalomyelitis if I say that's part of my disease. And I'd have to say I don't have any proof of it in my particular case. Credibility lost. <br />
<br />
And I refuse to accept the label of "CFS" on my disease. It's wrong, simply wrong.<br />
<br />
I hope all understand this is a personal decision of my situation in how I explain my disease to doctors and acquaintances. Since I do work for others in the community, when I speak on their behalf in text or voice, I will use the terms they prefer for their purposes. But in my Facebook posting about my disease, conversations I have with friends, family and acquaintances, and with doctors (including on their forms), my disease is "SEID." Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com0tag:blogger.com,1999:blog-8378332272337029621.post-70526810693780388322015-10-10T15:05:00.002-05:002015-10-10T22:19:31.699-05:00How to Accept Limitations - Finding the Right AnalogyThe date is July 21, 2006. It's the day I realized my gradual decline of function over three years into complete debilitation is from an incurable disease with no fix. I realized, thanks to the Internet, that I likely have the illness misnamed as "chronic fatigue syndrome." The prognosis described on multiple websites made me face a tremendous loss: I'll likely never go hiking or canoeing again in my life. I was only 40. While there were other day-to-day limitations and losses, those two were my great joys.<br />
<br />
As the grieving process began with tears rolling down, past words of wisdom came back to me. Some were words I had spoken to others; while others were words I had read or heard: "If you focus on what you can't do, then you will miss joys of what you still can do." "Everyone has limitations, some financial, others physical, others family situations. But life can still be full and fulfilling and joyful, despite those limitations." "None of us are promised life and health for 80 years. Death and disease can strike at any time. Be thankful for the years of health you've had and know that even with this loss, others have it worse. Some are at this age or younger facing suffering and death. Some have this disease but with no family support or stable finances." Such thinking brought a more positive frame of mind and stopped the tears. I would later tell people that this was my moment of acceptance, a stage in the grieving process I believe I achieved very early.<br />
<br />
Within nine months and seven doctors later, the process of elimination and tests confirmed the diagnosis. I quickly went from focusing on the problem out of my control to mission #1 of doing all I could to improve the slight chances of recovery (only 5% and more likely if changes are started early after disease onset). It required self-imposed limitations of activity. (To those who don't know, the primary symptom of this disease is an exacerbation of debilitating sickness symptoms from going over your energy limitations, which change from day to day and moment to moment. The problem is that you must stop and rest BEFORE you feel symptoms. When you feel symptoms, you've already done damage. This is why the term "systemic exertion intolerance disease" has been recommended to replace "chronic fatigue syndrome" as a name for the disease.)<br />
<br />
I figured I could either cut way back on my activity then or continue to push and have the illness debilitation cut back my activity by force, every few days in the immediate or making me bedridden in the long-term. I chose the former. Thanks to my supporting family, especially my husband, I made the changes. After a period of three years, I had improved to where I felt I could work 30 hours a week in a sit-down, low-stress job, as long as I could take a 45-minute, lie-down break in the middle of the day. <br />
<br />
I applied for a job that was like that, but I didn't get it. So I cashed in on my local notoriety and started a freelance writing and online marketing services business, working from home part-time. But I quickly came under heavy work load demands and difficulties with a high-stress client. I got sicker, including losing over 10 pounds down to a dangerous 88 pounds.<br />
<br />
I should have learned my lesson. But the thrill of producing and accomplishing and creating and contributing to the household (financially and otherwise) was so enticing and satisfying. Oh, I made adjustments again, got serious about taking meds, supplements and made some behavior modifications. I even refused a few clients because of the workload. But because I could do much of my work from a laptop on my bed, I continued part-time freelancing. Although, I never got back to where I could work 30 hours in an outside-the-home, sit-down job.<br />
<br />
I came to realize a couple of years ago that while my symptoms may fluctuate or even improve some, I will not be one of the 5% who recover. While I have not sold my canoe yet (hope springs eternal), I have found ways to enjoy nature within my limitations, focusing on what I have and what I can do instead of what I don't have or can't do. <br />
<br />
So, it was time to pursue disability, which required swallowing my pride and another level of acceptance. That meant going to a doctor with the knowledge and testing equipment to appropriately document my illness and its limitations. Just so happens, such an expert also can give better treatment suggestions. That doctor for me is Dr. Charles Lapp, whose practice is a 6-hour drive away from me.<br />
<br />
He explained how I could reduce "flares" or "crashes" by keeping my physical activity down to so many steps a day and stopping any activity that raises my heart rate above a certain level. So, I now sweep my floor once, maybe twice a week, but in stages: stairs one time, the kitchen two days later, if I'm up to it. I only fold clothes in 10-minute intervals no more than once a day and lie down afterward. When I go to the mailbox, I sit down or lie down afterward. And I rarely mop the floor. My husband does all other domestic duties, including grocery shopping, laundry, cooking 80% of our meals, etc. I bathe once every four days, usually. I now use a mobility scooter or wheelchair for museums or zoos, and I avoid or walk very slow in large stores, such as Home Depot and Walmart. I try to schedule at least two days of home time between outings.<br />
<br />
Dr. Lapp was pleased to see these changes. I thought I was being a good patient. But with some success in my freelance work, I got more clients and more work. I thought it would work for me to do some of it from my tablet while in bed and do about four hours at the desk on the days I feel up to it. I so enjoyed the moments of freedom from illness to do what I wanted, be creative and productive, when I didn't have the symptoms, even for just four hours of freedom. (Of course, I pushed to do 7 hours occasionally to meet a deadline, but I try to avoid that.) Now Dr. Lapp says I'm still doing the harmful "push and crash" cycle, even with just the four hours sitting at the desk, and even though I don't do anything else. And it's true. Once or twice a week, I'm so debilitated in a "crash" that I can't do any work, even from my bed.<br />
<br />
So, he tells me that even if I don't feel any symptoms and even if it is mental work instead of physical activity, I need to take a break every 45 minutes of the four-hour work I do on "good days." (On bad days, I can't even do that much due to symptom severity.) He tells me a handicap placard for parking would be helpful to conserve my limited energy and not expend it unnecessarily. And he tells me to drink more water throughout the day and take my many supplements 100% of the time instead of my 75% success rate. And I am on a low-carb diet.<br />
<br />
About taking a break every 45 minutes, the goal is to avoid the continuous mental drain on energy, by spacing the work and reducing it, just like I did with the physical activities. When I said I feel the urge to continue because I'm enjoying the work, in the middle of something and not feeling symptoms, and it's just so hard to take ALL those supplements (about 10 at every meal, every day), he said I should think of him sitting on my shoulder reminding me, like a kind and fatherly conscience.<br />
<br />
For healthy people, imagine a timer ticking as you work. After 45 minutes, you must step away for 10 minutes. Another 45 minutes on the clock, and then "ding," you must go lie down for 30 minutes. And so it goes. No matter what project you're in the middle of or deadline you have. Even corporate employers schedule a break every 3 or 4 hours. Think how disruptive it is to stop what you're doing every 45 minutes.<br />
<br />
What I really felt like is that I would have a ball and chain around my leg all day, and I would feel that weight on my activity and limitations on it, all day long. Even if I felt symptom-free, the disease was going to still limit what I do and don't do all - day - long. No relief. No freedom from it. Always thinking about it. Always either submitting to a master's demand to do or not do something or feeling guilty. Never being my true self. Never being me, the me I want to be and the me I am in my mind, the disease-free me.<br />
<br />
I realized it's like being in prison. Even people in prison have some opportunities of joy. They can read, socialize and even have recreation. But it's always according to the limitations imposed on them as to when, how and where. It's every day, all day; do or don't do according to limitations they did not choose.<br />
<br />
But the reality cannot be escaped. I can either put these restrictions on myself or let the illness "crashes" put total debilitation on me, sometimes for a day or so, or if I continue in my rebellion, possibly much longer. And so, I cried, again. <br />
<br />
I've come to realize that "acceptance" of loss with this illness, and likely many other chronic disabling illnesses, is a continuous or time-and-again situation. I've been ill for 12 years. And I still must readjust my behavior and attitude to prevent despair and keep up hope.<br />
<br />
So, if ball-and-chain and prison are negative analogies, where was I to find the motivation to make these new changes, add on more restrictions, and stay positive? I got myself away from thinking about myself a bit by noticing that an almost all-day restriction is also experienced by those with diabetes. They must check their blood once or twice a day, limit what they eat at each meal, etc. There are medicines and supplements for them to take, also. And they must do this to prevent symptoms, not as a result of symptoms. Yet, it is limiting, and somewhat limiting throughout the day. Meal choices are never "disease-free." You either submit to the disease limitations or feel guilty and experience the consequences. My father is in such a situation and is very compliant to this constant regiment. And he has had more life and longer life because of that.<br />
<br />
I continued to think of other situations that have continuous limitations. I thought of having to care for a baby. The baby must be fed, napped, diaper-changed, etc. throughout the day on it's schedule. So the mother does not ever have total freedom without the baby while she has it. Ongoing during each day, she must stop what she is doing or what she wants to do to care for the baby.<br />
<br />
Although I chose to not have a baby of my own, I find comfort in thinking of my illness as a baby that needs continuous care and thus preventing total freedom or even brief moments of total freedom. Mothers do it all the time, and sometimes the baby is a surprise, so it isn't always by choice. Yet, they do not resent their loss.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuJSJELNP3VeIOYf9dkEUR8WULbfy5RFTlsUPHvQiaPrjopVv1lckXSb9n-mek1r5KlAAmt7LK61jrSYJ0PEXwvpVAYPmK93C5wk-XUh9xz3yGHjn1VmzMuJKMsnnV1wySmvCfpjRgbJ9V/s1600/330px-Baby.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuJSJELNP3VeIOYf9dkEUR8WULbfy5RFTlsUPHvQiaPrjopVv1lckXSb9n-mek1r5KlAAmt7LK61jrSYJ0PEXwvpVAYPmK93C5wk-XUh9xz3yGHjn1VmzMuJKMsnnV1wySmvCfpjRgbJ9V/s320/330px-Baby.jpg" width="320" /></a>This also externalizes the illness. It's not me, Tina; it's the illness that needs this special treatment. I'm not being difficult or demanding or needing pampering, like a narcissistic, fragile "princess." I can even think of it as not being my body. It's this demanding baby, the illness. And it's not wrong that the baby's needs must be catered to. It's good. And so changing everything about my whole day around my illness needs is also not wrong, even if it imposes sacrifices on not just me, but others also.<br />
<br />
The hope is that the baby will gradually grow to be healthy by such sacrifices by the mother, day by day, week after week, for years. Gradually, the mother gains some freedom as the baby becomes less demanding. <br />
<br />
Although I will not be healthy again, I do think I can gain more function, and therefore experience more joys, if I take care of my baby.<br />
<br />
Now, I must end here because my baby needs some rest.Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com3tag:blogger.com,1999:blog-8378332272337029621.post-59944041701813623302015-03-17T22:44:00.002-05:002015-07-10T07:38:59.588-05:00Please Don't Let it DieHave you been paying attention to the U.S. Congress lately? Noticed that since the passage of the Affordable Care Act, they've not done anything noteworthy that would create progress on any major problem? The reason: gridlock. <br />
<br />
What causes gridlock in Congress? Two groups that won't budge on their position, even in the slightest, so that an agreement, a compromise, can be reached. Those are called "hardliners." Illegal immigration reform is a primary example. G.W. Bush tried it; Obama; even McCain tried it. <br />
<br />
According to Wikipedia, the last time Congress made any change to immigration law was in 1986. Let's see, that's 29 years ago. They tried in 2005 with a reform bill passing the House, and in 2006 with a reform bill that passed the Senate. So why didn't it get signed? The two bills were different and the committees could not come to an agreement. It died in Congress, particularly in Congressional committees. No progress. Status quo. Problems continue. No action for 29 years.<br />
<br />
So, Obama comes in and says he's going to do some reforms without Congress, because they can't agree and can't act. They can't produce anything because they are unwilling to compromise, a whole bunch of hardliners. They debate and do power plays to force their position or prevent their opposers from winning. It's win or lose, not how can we work it out. So, neither has enough power to force their position on the opposition, so nothing changes.<br />
<br />
<strong>It's not about immigration</strong><br />
You might think my motivation for writing this is a concern over immigration. It's not. I am concerned that "hardliners" on the name and criteria debate will cause the IoM report to die, leaving us with a status quo for another ten years.<br />
<br />
So we didn't like the IoM process. But that is the recognized, scientific process the US government uses. Our disease won't be respected if we say our disease needs a pass on the way scientific conclusions are reached. Let's see if the IoM process turned out as bad as expected.<br />
<ul>
<li>The fear was that ME/CFS ignorant (no experience with the disease) would be making decisions. But the majority, 8 out of 15 on the committee, were ME/CFS experts or patients. </li>
<li>The fear was that they would not recognize PEM as the primary identifying symptom. But they made PEM a requirement in the criteria.</li>
<li>The fear was that they would give too much credence to the PACE studies. Yet they said there is no conclusion that GET and CBT are effective treatments. </li>
</ul>
But that's not enough for hardliners. Only Canadian Consensus or ME-ICC will do. The US government, through the IoM, has come closer to what we want than what we have now: Fukuda. But are we going to reject it still? So, will we try to destroy it, leaving us in gridlock, in status quo? Because we know the US government, especially now, is not going to just endorse a criteria 12 years old (doesn't include recent research) and not endorsed by an independent committee of experts who used the literature evidence as their guide. Are we going to try to push what we want through power plays, which means even if they did accept what we want it won't be accepted as scientific by medical professionals? In that case, we still lose.<br />
<br />
Are we, including other experts, going to insist on our pet amendment and criticize the name or criteria and try to block it if it doesn't have our amendment? By what scientific (and expensive and time-consuming) process would an amendment be made so it has credibility for being evidence based and not popularity or politically based?<br />
<br />
And if we end up stalemated without any negotiations or openness to work with the US government health agencies, we may find the US government just acts anyway, without including us. They hold the power. Do we want them to just ignore us and our experts?<br />
<br />
I see some parts of the name and criteria I think ought to be changed. But I am not so arrogant enough to say I know better than those disease experts and patients who served on the IoM committee. I have the highest respect for these loyal and knowledgeable doctors and researchers. And even if I had served on the committee, might I have made a compromise because causing a stalemate on the committee or putting in a dissenting opinion would have done harm to the good of the whole? <br />
<br />
Pat Fero said we can't let the perfect be the enemy of the good. Progress can only happen when there is compromise when working on a committee, whether it be in politics or science.<br />
<br />
<strong>A lot is at stake</strong><br />
I say it is time to act on this opportunity for progress. It may not come again if we don't do something. What's the chances that the government will spend any more money to solve the name or criteria problems if IoM report is rejected due to popular demand? Just imagine someone suggesting it within the government. "Remember the SEID failure" they will hear. $1 million that didn't produce any changes. Can't you hear them now: "You can't solve this because disease experts and patients will not be happy with the evidence; they will only be happy if they get their way based on their opinions. They don't respect the scientific process we use for all other diseases." Don't give them the satisfaction, I say.<br />
<br />
And don't kid yourself. Publishing more papers with a criteria in medical journals will just fill space in the journal unless it has the credibility of a large medical professional organization of certified and trained experts or the IoM. There would be no structure for educating doctors on it or disseminating it to all doctors. No one but large medical professional organizations or the government can do that. Has the CCC revised or ME-ICC, published in journals, made a difference in main street medicine? No. <br />
<br />
I know the stakes are high. And it feels like it will be a long-lasting situation. So we want it perfect. But did you know that it used to be common for a bill to be passed in Congress and then another bill passed later that makes changes? Why can't this be the case here? The IoM committee recommended a review of it all again in five years. I know it's been so long since the government has done anything, it's hard to believe they will keep this as an ongoing process. But what's the alternative? <br />
<br />
The American College of Rheumatology and the American Academy of Neurologists and the American Medical Association are not going to step in and save us from the CFS label or Fukuda and Oxford if the IoM report dies due to criticism. And the IACFS/ME lacks the muscle or clout for many reasons, one being that they are not certified or trained experts in the disease. <br />
<br />
I say we use all our force to make the US government hire the dissemination czar the IoM recommends and educate the doctors with those biological abnormalities mentioned in the IoM physician's guide. Tell doctors about PEM and why our bodies can't tolerate exertion. And push for them to dedicate more money to researching this disease. Then call for them to convene the experts, in the IoM framework if needed for credibility, and have it all reviewed within five years. <br />
<br />
I'd hate for debate and disagreement to give the US government an excuse to do nothing. How long then before they try again? Decades?<br />
<br />
<strong>I'm worried</strong><br />
This concern actually made me anxious a few days ago. Will this opportunity pass, leaving us in gridlock more decades? <br />
<br />
But I gradually saw more and more people saying (social media) that the IoM report recommendations should be accepted. There for a few weeks, I was concerned that what seemed to be the only voice speaking publicly, expert and patient criticism, might lead us to nothing since I don't imagine the US government will spend money on this issue any time soon, if this effort didn't produce change. I just don't want to end up with that dadblasted name for my disease while experts and patients insist and government won't budge. <br />
<br />
What can you do? let it be known in a public way if you think the IoM report recommendations should be acted on, not because they are perfect or because it's what you think is ideal. But do it because it is the only workable option for progress in the name, criteria and physician education that we have at this time. <br />
<br />
We have two realistic choices: The US government accepts and does what the IoM report recommends, or we stay in the continuous debate and gridlock for years. There is no will, and now no money behind the CCC or ME-ICC becoming the one promoted by the US government. Did 50 experts signing a letter make that happen? No, it's not going to happen.<br />
<br />
So if you want progress, speak publicly, especially to CFSAC members, and tell them the same thing many people have said they want Congress to do: stop the gridlock, be willing to compromise for the sake of some progress and act.<br />
<br />
Well, I was going to say something about the coding issue, but my blogs are too long. So I'll save it for another blogpost. <br />
<strong></strong><br />Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com3tag:blogger.com,1999:blog-8378332272337029621.post-74300357343312013982015-03-14T13:24:00.003-05:002015-03-15T10:29:42.618-05:00The SEID Criteria: How do you like your porridge?When I think of the title of this blog post, Goldilocks comes to mind. A criteria for a disease should strike a balance between sensitivity (not leaving out those who have the illness) and specificity (not including those who have something else). It should be just right. <br />
<br />
But, what is just right with ME/CFS? What elements are needed in that porridge and at what temperature so that it is nutritional and pleasing?<br />
<br />
Jennie Spotila did a pretty good job of assessing the new SEID criteria and some questions it raises. So I made a comment on <a href="http://www.occupycfs.com/2015/02/25/pem-differential/" target="_blank">her blog</a>. She particularly addresses the fear patients have expressed that the criteria will mean depressed people will mistakenly be diagnosed with SEID (systemic exertion intolerance disease, the proposed new name for ME/CFS). <br />
<br />
SEID criteria requires three things:<br />
<ul>
<li>Loss of function accompanied with fatigue</li>
<li>Unrefreshing sleep</li>
<li>Post-exertional malaise</li>
</ul>
Then it requires at least one of the following: orthostatic intolerance or cognitive dysfunctions.<br />
<br />
<br />
<strong>But what about the Canadian Consensus Criteria and Fukuda?</strong> <br />
The CCC is complex, takes more time and includes many features and variables. It's attempt seems to be more comprehensive of what symptoms are seen in patients. And the CCC was published in a journal that is no longer in publication and which did not have a strong reputation in mainstream medicine. And it is not evidence based considering today's evidence because it is 12 years old. Updates have been attempted, but there are two and they are still complex.<br />
<br />
The IoM was charged with determining a criteria that is evidence based (which is a higher threshold than most of studies in our disease) and up to date and so easy a primary care doctor, or any doctor, can use it confidently. <br />
<br />
Fukuda is even more outdated and wasn't evidence based either. It was designed for research, not clinical use. But absent a medical professional organization of certified experts creating a clinical criteria, CDC has Fukuda on its website and is featured in its physician aid materials. It has only one requirement symptom and many optional ones. A fibromyalgia person could meet the criteria; depressed people meet it and so do some MS people. Of course, the doctor is supposed to screen those out first. But that is a problem in clinical use because a person could (and very likely does) have both ME/CFS and fibromyalgia. So there's a lot of people who have both but only have the fibromyalgia diagnosis. Fukuda does not help in distinguishing the two. I had one research doctor tell me, "Doesn't every fibromyalgia patient have chronic fatigue?" Well, yes. But does that mean every fibromyalgia patient has chronic fatigue syndrome, which is what I had asked about his research cohort? I would say no. But, if CFS is defined by Fukuda, then I would venture to say all fibromyalgia folks would meet the Fukuda CFS criteria. So it doesn't distinguish between the two.<br />
<br />
And really, isn't that what a disease criteria is supposed to do? It's supposed to tell you how to distinguish which disease a person has. So the IoM committee took the approach of trying to find the disease features that are different in this disease from others. That is why they did not include myalgia or other pain. Just how is the pain of our disease different from other pain conditions? And is it the same kind of pain in each patient? Does each patient have pain? (I didn't for the first three years of the disease.) And if a patient has our disease with pain, could it be they actually have this disease and fibromyalgia? If so, is knowing the patient has pain helpful in distinguishing which disease they have?<br />
<br />
<strong>Too loose or too tight?</strong><br />
I find it very interesting that many are concerned the SEID criteria is too loose and will include depression patients. I figured out that a person could meet the SEID criteria and not meet either the Fukuda or CCC. Because more symptoms are required for both of those than is required for SEID. That would seem to indicate that those two other criteria are more narrow. <br />
<br />
But we know a person could have fatigue, muscle pain, memory problems, headaches and joint pain and meet the Fukuda criteria, even if they don't have PEM. So it's too broad. A person could meet Fukuda and not meet the SEID criteria. Fukuda makes optional a few things that SEID requires, including PEM. That would mean the SEID criteria is more narrow. <br />
<br />
As for the CCC, it would seem the CCC is more narrow because it requires more. But, let's see what parts of CCC are not included in SEID to see if they should be required in a criteria for this disease. But first, here are symptoms they both require:<br />
<ul>
<li>Fatigue</li>
<li>Post-exertional malaise</li>
<li>Unrefreshing sleep </li>
<li>Symptoms for six months in adults</li>
<li>Loss of function (reduced activity)</li>
</ul>
I want to point out that while fatigue is required in SEID, the emphasis is on loss of function that is accompanied by fatigue. So loss of function is the symptom that is more distinguishing, not fatigue.<br />
<br />
Symptoms required in CCC but optional or not included in SEID criteria:<br />
<ul>
<li>Pain</li>
<li>Neurocognitive dysfunction (2 types)</li>
<li>Two symptoms that would fall under either immune system dysfunction, autonomic dysfunction or neuroendocrine dysfunction.</li>
</ul>
Do these additional requirements help distinguish this from other diseases? Well, as I discussed above, the pain in our disease is different in each of us, less common and not of a nature that a doctor can tell if the pain or headache you are having is different from pain and headaches of other diseases. So requiring pain does not help in diagnosing.<br />
<br />
The neurocognitive is required in CCC but is optional in SEID. From what I've seen and heard experts say, they don't see the neurocognitive dysfunction as much in children or adolescents with the disease. So making it a requirement would mean children with the disease won't get the diagnosis. And, in the aim of making it easy to teach and easy to be used, they opted for one set of criteria to be applied to adults and adolescents. The other required parts of SEID criteria can identify pediatric cases without having to have two different criteria depending on age. Simpler, easier, and still effective.<br />
<br />
Also, I have seen some patients not recognize that they have neurocognitive dysfunction. This is discussed in "Osler's Web." So if a doctor asked, the person might say they don't have that problem. I didn't notice it until 2.5 years into my disease. I started making mistakes in my typing, making mistakes in adding up the bank deposit or in balancing my checkbook, unable to remember a phone number long enough to dial it. But when is it normal brain glitches, stress-induced or a symptom of a disease? It's hard to tell in the beginning. So making it a required symptom when many children with the disease don't have that symptom and many patients don't recognize they have it when they do could hinder making the right diagnosis.<br />
<br />
The neuroendocrine symptoms in CCC are temperature control problems, IBS, etc. All of these are also seen in other diseases. It doesn't help in distinguishing this disease from others.<br />
<br />
The autonomic dysfunction is optional in SEID and CCC. I had this since I was 6, decades before I developed this disease. So it is a key feature for me. And in fact, a study that showed the high prevalence of orthostatic intolerance in CFS patients helped me know for sure I have CFS, when I developed the CFS symptoms later in life. The OI have caused fainting spells every couple of years when I was a child and two episodes as an adult. However, I went for a tilt table test last fall, and it showed normal. How could that be? Was it the French onion soup (fluid and salty) I had right before? Who knows. But I know if OI was a requirement for the disease as measured by a tilt table test, I would have not met the criteria at that moment. But that doesn't mean I don't have the disease. Maybe that's why IoM committee didn't make it required.<br />
<br />
Many wanted immune system dysfunction to be a requirement. But immune system symptoms occur in far fewer of us, that is swollen lymph nodes and sore throats. I didn't get sore throats until year three, and it was very mild. And I don't have it now. I never had swollen lymph nodes. I do have low natural killer cell function, when tested by two experts. But I didn't have it when tested by an unknowledgeable internist that I asked to run the test. I suspect she ordered the wrong test or something. This goes to show that there is either a problem in how labs run the test (some labs) or doctors don't know how to order the right test. Plus, other illnesses will show the same abnormality. So, does it help in distinguishing this disease from others? Does requiring sore throats or swollen lymph nodes in the criteria help to distinguish this disease from others when many with this disease don't have it?<br />
<br />
So what they did include in SEID is not meant to be comprehensive, but it is meant to be easy for the doctor to use in distinguishing this disease from others. I think it's not really helpful to ask if it is too loose or too narrow. The question is whether it can aid the doctor in identifying this disease in a patient and do so within the circumstances today's doctors, including primary doctors, must practice in. While testing it in a real, multiple-clinic fashion would tell us for sure if they met their goal. It's clear that was their goal. And that's why they did not include symptoms many of us experience but are not distinguishable from symptoms of other diseases or not found in all of us.<br />
<br />
I would imagine that some feel their symptom cluster is the one of "the disease." Yet, 60 symptoms are seen in us, but not all in each of us. For example, Laura Hillenbrand's most debilitating symptom at times has been vertigo. It is a symptom many of us, including myself, have experienced. But is it constant in all of us? So should it be in the criteria? Is there something different about our vertigo so it would help in identifying this disease instead of others? No. Yet, when we do have it, it can be very debilitating and seem like a major factor of the disease impacting us. <br />
<br />
I know the logical argument is that the combo of symptoms distinguishes this disease. So analyzing each one separately is not understanding the power of combined symptoms being able to distinguish this disease from others. And that is true. And the SEID is a combo of symptoms that when put together, they think distinguishes this disease. It's really a matter of how many symptoms to put in the combo? Requiring or having to sift through many optional ones is complex when, if you can get to which ones are at the core and are more unusual, you can require fewer and still have it work and be easier to use. That seems to be the goal.<br />
<br />
Why does it need to be easy to use? Because we want doctors to use it. The CCC is not used now in clinical practice, and I've been told doctors think it's too complex. Is it an excuse? Maybe. But let's give them something more like what they want. And then maybe they'll use it. At least we remove one reason they give for resistance.<br />
<br />
<strong>The power is in the guide.</strong><br />
The Institute of Medicine ME/CFS Committee <a href="http://www.iom.edu/Reports/2015/ME-CFS.aspx" target="_blank">clinician's guide</a> has come out. This is really the important literature that can educate the clinicians even more than the name and criteria. And as I hoped, it has those wonderful tables for each of the symptoms. The tables include words patients use to describe each symptom and the objective tests that show a biological abnormality that has been seen in some studies that could explain the symptom (except unrefreshing sleep, which has no objective test). These tables are helpful to the clinician and informs them of the true nature of the disease. I expect the clinicians will begin to see the pattern in what the patients say about their experience, as do the experts who have been focusing on our disease do. There are also charts to show how often patients complain of each symptom compared to healthy people. The guide includes immune system abnormal findings and says these might turn out to be diagnostic biomarkers after further study. <br />
<br />
But, I wish the guide had a few tips on how to easily differentiate SEID from other conditions that at first glance may present with same or similar symptoms. A table that has these and then lists primary symptoms for each could easily show the distinctions. Many of those can be eliminated through tests for those conditions. But, as in depression, it's more the nature of the symptoms and other symptoms that help to differentiate it from SEID. A few key questions could help the doctor distinguish the two conditions. But, I still mostly fear doctors continuing to diagnose SEID folks with depression than I do depressed people being given a SEID diagnosis. SEID is not to be diagnosed until symptoms have been experienced for six months. Most clinicians will first look at easily treated conditions (including depression) as a possibility in those six months.<br />
<br />
I know the argument that if you list some, you will miss others. But, there are a few diseases that are more commonly mistaken for our disease. I would love to see a guide on distinguishing SEID from those. One reason is not just to help diagnose, but it will also be helpful in educating about our disease by making distinctions as well as showing similarities. It could be done in a table and take no more than two pages, maybe one.<br />
<br />
I wish they would have explained a bit more thoroughly about the time between "exertion" and the increase in symptoms. Experts and patients know it is sometimes a full two days between the two. So the correlation is not easily discerned, especially early in the disease. <br />
<br />
<strong>Please rename PEM.</strong><br />
I don't understand much of the fear and criticism of the SEID criteria because from soooo many, I heard that PEM should be required; it is what defines our disease. So it's in there, as a requirement, just as patients said. But many still aren't happy.<br />
<br />
One last thing about the criteria: I hate the term "post-exertional malaise." I sent in a comment to the IoM committee saying that. I wish they had taken this fresh-start opportunity to get that terminology right. They didn't and didn't explain why.<br />
<br />
First, "post" only means afterward. It connects by sequence and does not indicate cause or timing.<br />
"Exertional" is misleading because the trigger for the "crash" or "collapse," as we colloquially call it, can be activity that most people think of as ordinary, even sedentary, such as sitting at a desk for an hour, emptying the dishwasher, etc. "Exertion" is associated with lifting weights or running a marathon or opening a new jar. The trigger for the crash for us is not just exertion like that; it's normal activity. Plus, other stressors, such as an infection, psychological or emotional stress, surgery, an accident, and etc. create the same crash.<br />
"Malaise" is no where near describing the headache, mental fog, fatigue, pain in lower limbs, hot and cold flashes and more that come from the activity or stressor. <br />
<br />
I would prefer "activity or stressor-induced sickness symptoms." ASISS. I use a general term of "sickness" symptoms because people understand the experience of feeling sick. It's like coming down or having the flu, except without the respiratory part. But all the rest is like we are sick with something. And this would be more clear to doctors too. "Malaise" can include sickness symptoms, but it's more vague and can include just not having motivation, being slow. It's not specific enough to describe what we have, which is like we're sick with some illness, an infection.<br />
<br />
The question could be asked, "When you have a day of activity, within a day or two, how would you describe your symptoms? Like you are coming down, getting sick with something?" (I know. It's too leading, but something like that can help the doctor find out if they have this disease feature.) "Post-exertional malaise" is such a vague term that it doesn't convey hardly anything in the words themselves. UGH! Since communications is my profession, this bugs me.<br />
<br />
If the IoM Committee is considering tweaks, I'd like to say the temperature of the porridge is good. It describes my condition. It's not too hot (narrow) or too cold (broad). It's just right, temperature-wise. And, it is pleasing to digest, that is it will be easier for doctors to use. But the ingredient of PEM needs to be improved. It's the wrong color. It's misleading and confusing. This is an opportunity to use clear language to describe the most important and distinguishable symptom. Vague terms will not be as effective to the goal. And the side dishes, as in the clinician's guide, could use some additions. It's almost right, but could use a little more flavor.<br />
<br />Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com4tag:blogger.com,1999:blog-8378332272337029621.post-39298384756091230242015-02-14T10:33:00.000-06:002015-03-14T15:47:09.082-05:00The New Name - Three out of Four Ain't Awful, But Is It Enough?Did you read the whole IoM report? I did, which is one reason this blog is coming out now, days after the big announcement. I've also had a PEM crash, or I'm coming down with a virus; at this point I can't tell which. <br />
<br />
If you have not read the whole report, you're not alone. Clearly most reporters doing reports on the report have not read the report. Likely, most doctors won't read it either. And Congress? Yeah, right. But some in the government health agencies will read it. And so will some journal editors (or I guess they have already).<br />
<br />
I was like a man whose wife was going into labor the days before the release. It was going to be great or awful. But either way, it was going to be a big change. I coped by using two strategies: I planned a ritual to look forward to either way, that is a margarita (virgin if good, with some alcohol if not). And I lowered my expectations.<br />
<br />
As to the latter, I figured it was not going to be perfect, and I was not going to get all I wanted. Decisions made by committee are by nature reflecting diverse opinions. Areas of disagreement require compromise.<br />
<br />
So, I said I would be happy if two things happened: that what is recommended is an improvement, and that there is not dissent of committee members. If some gave a dissenting opinion, then money wasted, and we're left with status quo.<br />
<br />
I think the IoM's report does meet those two requirements I had. Yet, when I listened to the public briefing, my gut reaction was disappointment. Since then I have felt conflicted. I have tried to change my feelings. But, they are still there.<br />
<br />
Still, despite my feelings, I will support this change. I'll tell you why in a moment.<br />
<br />
First, I want to remind you, dear reader, of some of our experts who served on this committee: Dr. Ben Natelson, Dr. Lerner, Dr. Nancy Klimas, Dr. Ron Davis, Dr. Lily Chu, Dr. Lucinda Bateman, Betsy Keller and Dr. Peter Rowe. <br />
<br />
And, here are some of the reviewers: Maureen Hanson, Dr. Charles Lapp, Dr. Susan Levine, Dr. Daniel Peterson, Dr. Jose Montoya, Christopher Snell, Dr. Susan Cockshell, Dr. Katherine Rowe, Dr. Ruud Vermeulen and Yasuyoshi Watanabi. <br />
<br />
Recognize any of these names? These are researchers or clinicians focusing on our disease, including a few with personal experience either by having it themselves or by a family member having it. That's at least 18 of "our experts" involved. It's almost a who's who of experts in our disease either writing the report or reviewing it.<br />
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<strong><span style="font-size: large;">SEID - systemic exertion intolerance disease</span></strong><br />
<strong></strong><br />
<strong>What I like: </strong>"systemic," "disease" and "intolerance."<br />
<br />
"Systemic" is perfect for indicating the biological impact. I'm sure there were some committee members who fought to have in the name their theory of the major system that is the cause or effect. But look again at the list of "our experts" and note what difference of opinions they have. Klimas will say it's system-wide immune dysfunction. Keller will say it's in the energy system. Natelson will say it's the brain. Lerner will say it's viral. What can be agreed on and is supported by the evidence is that multiple body systems are impacted when patients exert themselves. And "systemic" conveys that. "Systemic" makes it clearly physiological and is supported by the science and encompasses all theories of "our experts."<br />
<br />
"Intolerance," while having an attitude aspect as one of its definitions, also refers to physiological adverse reactions to what should be handled fine in healthy people. Some examples are alcohol intolerance, gluten intolerance, lactose intolerance, lysinuric protein intolerance, orthostatic intolerance and exercise intolerance. Gluten intolerance is a fad diagnosis now. But it is a true medical condition. So in a medical context, "intolerance" denotes an abnormal and adverse body reaction.<br />
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"Disease," well, this one I am most pleased with. Thank you, thank you, thank you. They rejected "syndrome" and "disorder." Even some things that cause death (AIDS and SIDS) still have "syndrome" in the name. We all know "syndrome" is so broad that it is used for nonmedical situations, including Peter Pan syndrome, Cinderella syndrome and even referring to society responses. It was a bold move, some might say a leap, for this committee to go with "disease." And that word is packed with meaning. This committee is sending a strong message to doctors with that word. Why I've even heard some of our experts say "disease" is only appropriate after etiology is known. Not so, says this committee. It's a disease.<br />
<br />
<strong>What I don't like: </strong>"Exertion." <br />
<br />
I join with fellow patients in saying that indicating our disease is about bad effects from exertion is too narrow for a description of our disease. First, for most of us, it's activity, not just what the world thinks of as exertion. When I sweep my floor for five minutes, I must then rest for two hours. My body cannot tolerate that activity. It's not just when I run a marathon or lift weights, what the world and doctors will think of as exertion (as though I could). Secondly, it implies that as long as we don't exert ourselves, we won't have any symptoms. Just go to work at your desk job for 8 hours, rest for a few minutes then fix supper. Just make sure you have a healthy person open that jar for you so you don't exert yourself. Because of that, I would have preferred "activity intolerance."<br />
<br />
Plus, it's also stressors, such as infections, psychological and other physical stressors, that we can't tolerate without getting PEM. But I don't want "stressor" in the name because people will think just "stress."<br />
<br />
I am also concerned it might become the butt of jokes of people who are lounging and don't want to exercise or clean out the garage saying they have "exertion intolerance disease." "Leave me alone," a man says to his wife while eating nachos while watching his favorite football game. "I'm feeling sickly. I think I have exertion intolerance disease." However, that has not happened with exercise intolerance. But that is a symptom, not a disease name.<br />
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That brings me to another point. I agree with Prof. Leonard Jason that they should have tried the name or some names out on a focus group, the public and some docs. How does the public view the name? What does it make them think? We really don't know because it hasn't been tested. And yet, last time an organization did a focus group study, the group said the name should remain "chronic fatigue syndrome," just educate the public more on what the disease encompasses. Can't always trust focus groups. And to do that would have required time and likely money, money they may not have had.<br />
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I'd like to see what Dr. Clayton says are examples of other diseases named after one symptom when the pathophysiology is not known. I'm sure she's right, else she wouldn't have been so definite about it in such a public way. I have heard of one or two, but not many.<br />
<br />
One example is yellow fever. And that name hasn't changed. It's based on two clinical signs, not the biological mechanism. I'm sure the disease has other symptoms, too, besides fever and jaundice. And then there is the awful name of mad cow disease. What an awful name to call a disease that kills humans! We aren't the only ones with bad disease names. It would be pretty interesting to read through disease names and see what it would mean to you if you didn't know anything about the disease. Werewolf syndrome, as an example. Vampire disease is another. Yellow fever could mean people feel feverish from seeing the color yellow. Mad cow disease? Does that mean the person starts mooing all the time like a crazy cow? 'nuf said.<br />
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I will say, though, that maybe doctors will stop suggesting SEID patients take up a rigorous exercise routine by understanding the name. I can see a patient asking, "Doc, when I feel the fatigue, should I push through?" And he says, "No, your body has a system-wide intolerance to exertion. So, you should be careful to not push. And you need to make sure your family understands this. There are limits of what and for how long you can do things. You will make your symptoms worse if you exert yourself." So, even with the word "exertion," I can see some benefits. How many of us wish our doctor told us early on to not push through the fatigue?<br />
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<strong>Why am I supporting the name change anyway?</strong> I can understand why "activity intolerance" might have been rejected. Even the bedbound are encouraged to do some activity, even if it's finger raises for only three minutes a day. Our experts have cautioned us on deconditioning being a real consequence. Depending on the level, both Dr. Lapp and Dr. Klimas encourage some activity, but pacing and with limits. So it isn't exactly accurate to say our bodies can't tolerate any activity. After my first year (2003) of the on and off respiratory infection(s), I went into a stage of full function for about five hours each day (11 am-4pm). I don't mean hiking. I mean desk work and running errands, etc. At about 4, the plug at the bottom of my feet would come out and all the energy would drain out, or that's how it felt. I met the criteria because most people can be active 12 hours a day. Despite the limitations, I was still able to tolerate some activity, until my plummet in 2006. For three years, I could tolerate some activity. And even now, I can do some without a crash, but much less.<br />
<br />
And, remember advocates, haven't most of us been saying, "It's PEM, stupid"? We, that is many of us, have been telling "them" that the defining symptom is PEM. And note, "post exertional malaise" has the word "exertion" in it. Be careful what you ask for.<br />
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As I predicted, "myalgic encephalomyelitis" was rejected because the science for that name has not been proven in big enough studies. And even if it's there, it's not for sure that inflammation of the brain is at the root of the symptoms. In multiple sclerosis, it's clear the multiple sclerosis in the brain causes the symptoms. But with other body dysfunctions in our disease, namely aerobic system dysfunction, HPA axis dysfunctions and system-wide inflammation, has it been proven that brain inflammation is the primary symptom cause? And even some of our experts feel that there has been no proof of spinal cord inflammation, even though there is evidence of inflammation around the spinal cord. I have heard some of our experts say "encephalopathy" is more accurate. And the report mentions that option, but they still rejected it for the same reason. We must realize that if the committee came out with "encephalomyelitis" based on studies of no more than 300 patients each and based on a flimsy criteria and not in comparison with other fatiguing illnesses and with disregard to the abnormalities in other body systems, then it would be rejected in the marketplace of medical professional societies and mainstream docs. I don't know what level of proof they need. But I'm sure there were people on this committee and reviewers who said it should be "ME." And I'm sure they knew rejecting it would be unpopular with many patients. So, for the committee as a whole to reject it means our own experts were not convinced it was the best option and felt strong enough to go against popular opinion. I respect that. They know the disease just as much if not more than me. And, they have a better understanding of what fellow doctors will accept.<br />
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And I must agree, myalgia is not a major factor for me; never was. Oh, I had it, still do sometimes. But it isn't major, and I would be hard-pressed to distinguish the difference in the fibromyalgia pain and pain of ME in describing it to a doctor. And I bet the average doctor would have a hard time with distinguishing myalgia of ME from myalgia of fibromyalgia. If pain is a major factor, then you likely also have fibromyalgia.<br />
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For those who still insist on "ME," may I also note that you may be loud, but you may not be the majority. When the IoM committee asked four patient representatives (two patients and two relatives of patients) what name they think it should be, none of the four longtime advocates said "ME." Canary in a Coalmine just did a survey. Less than half said it should be "ME." Granted, it was more popular than any of the others, but not more than the others combined. It was less than half that chose that as the best name.<br />
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Besides, it took me a year to learn how to pronounce it. And it has a lot of misinformation, stigma with it in the UK. Using "ME" does not do away with the misinformation and stigma, no matter what the words mean. The UK treatment studies go with "ME."<br />
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My suggestion was "commeo encephalitis." I figured "commeo" is Latin and means up and down, back and forth. This would communicate to doctors that our symptoms fluctuate, so you can't go by what we can do or how we look when in the office. And I figured there was more evidence for inflammation in the brain than the spinal cord. Plus, it's nice and medical-sounding. But, you know what, some of you would disagree with my choice. And I'll admit, it isn't good for the severe cases. <br />
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Is there a perfect name based on the science now? Probably not. I think about Ron Davis, whose son is bedridden. I think about him serving on this committee and being ok with this name, "systemic exertion intolerance disease," when seeing his son everyday unable to do the simple things. Davis said in a news article that the name thing was hard, and they went through about 100 choices. I think of Lily Chu, who has this disease. She served on this committee and has her name on the document suggesting this new disease name.<br />
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So, with some humility, as I'm sure the individual committee members had to have, I say I trust that this is the best they can do for now considering the state of the science and the differing opinions, even of our experts on the committee. If they can set aside their strong opinions to pull together for a better name, even if not a perfect one, then I can join them. I know they feel just as passionate about this as I do.<br />
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Besides, I like three out of four of the words, and it is better than "CFS." <br />
<br />
As a sidenote: I have heard from multiple sources that "they" don't like naming diseases after people any more. (I don't know who "they" are.) <br />
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I tried out the new name on my husband. He said it conveys to him that the person gets sick from exertion. So, it is accurate, just incomplete. I told him some aren't happy about it. He asked what they suggest, besides "ME." I told him some like "Nightingale disease." He said, "After a bird? Why would you name it after a bird?" So I told him about Florence Nightingale's likely connection to the disease. He said, "But I think it's a bird too, and if it isn't it, sounds like a bird. It's a weak, feminine-sounding name." So, I told him another choice was "Ramsey's disease." He said that sounds like something Egyptian archeologists get. So, there you go. From a retired railroad truck driver. The words convey something different than what many of us think they convey. There is no perfect name that is based on enough scientific evidence to be accepted by mainstream medicine and for which all experts and patients will agree.<br />
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I'll take a break now and give you a break. I will blog soon about the other changes and features in the report. Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com8tag:blogger.com,1999:blog-8378332272337029621.post-30891978284078030242014-02-02T04:50:00.001-06:002014-02-02T04:56:10.300-06:00Name It, then Put It into a Box, It's Human Nature<span style="font-family: Calibri;">It’s one of those nights when sleep won’t come. So I decided
to get a snack and purge the philosophical thoughts that have floated in and
out of my consciousness in the last few months.<o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">Have you ever noticed the human need to categorize and name
things? One can only assume and reason we inherited this need from our creator.
Nature is categorized by species. The Bible says creatures are to reproduce
according to their kind. Dogs mate with dogs and produce dogs. Watermelon
cannot mix pollen with green beans and produce tomatoes. <o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">So in addition to biblical instruction, God put in a natural
species barrier that separates living things. (sidenote, this is why I don’t
think it is right to mix species genes through genetic modification.)</span><br />
<span style="font-family: Calibri;"><o:p></o:p></span><br />
<span style="font-family: Calibri;">And, according to the Bible, the first thing Adam was to do
is name everything in his garden. A name is a way to distinguish one thing from
another. So along with names or labels, we have definitions. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Saying what something is and what it is not is necessary for
communication. And science has proven we have an inborn need to communicate. A
child neglected, with no communication with parents, will not develop normally.
A name that identifies something is one of the first concepts a baby learns.
Remember in the movie how Helen Keller’s biggest breakthrough was learning a
word to distinguish water from other things? Understanding naming and definitions changed her world.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">As a communications specialist by trade, I analyze words and their definitions daily.</span></div>
<span style="font-family: Calibri;">However, some categories go beyond the natural groupings.
And some things defy definition, so finding a good name to distinguish it will
be imperfect.<o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">A good example is race. Races developed by people separating
geographically and marrying within that group. The dominant genetic physical
characteristics of that group became more prevalent in each generation until
the group had a common look. But this is not a natural division as different
races mate with no physical problems. The chromosomes match. We are all one
species. So a manmade label of “race” and category is not scientific. And
actually, we are seeing the gradual dissolving of racial division with global
transportation and marrying practices. </span><br />
<span style="font-family: Calibri;"><o:p></o:p></span><br />
<span style="font-family: Calibri;">In addition to species,
scientists decided to form larger categories such as reptiles, mammals,
insects, etc. Are these groupings by physical similarities a natural division
or manmade? I purport that they are manmade. I believe our creator views the
divisions of species, but not the classifications, as they are called. And in
addition to classifications, scientists further categorize animals into family
and genus. Are these categories, based on physically common
characteristics, a similar manmade attempt as separation of humans into races? <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0T1deZJgkr33eTct6WqA5SVuaEPCJmrMW4Di9yK-FvTIPdAHx4Uk8BqZ2YGN5WBbwIuH5aoJnecRmjEJ6wqjs6d0I1qHe7_itUYw_DwrwOXiTQGvfa9XMhlm9a33iZ2nXFmhj6sBg-EDI/s1600/250px-Platypus_BrokenRiver_QLD_Australia.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0T1deZJgkr33eTct6WqA5SVuaEPCJmrMW4Di9yK-FvTIPdAHx4Uk8BqZ2YGN5WBbwIuH5aoJnecRmjEJ6wqjs6d0I1qHe7_itUYw_DwrwOXiTQGvfa9XMhlm9a33iZ2nXFmhj6sBg-EDI/s1600/250px-Platypus_BrokenRiver_QLD_Australia.jpg" /></a><span style="font-family: Calibri;">Exhibit A is the platypus. If these classifications and
other categories were God-designed, then which one does the platypus fall in?
It has the bill of a duck, lays eggs like a reptile and has hair like a mammal
and suckles its young like a mammal. And it has a poisonous stinger like a sea
creature. It is such a mish-mash of animal traits that discoverers' descriptions and
pictures of it were first thought to be a hoax. Or is it just appropriate to
say it and all animals don’t have to have these layers of categorization? Why
can’t it just be the platypus species, breeding within its own kind?</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I'm sure the platypus is not the only one. Tomatoes are eaten and thought of as a vegetable, but it is classified as a fruit by scientists. <o:p></o:p></span></div>
<span style="font-family: Calibri;">And this brings me to what got me thinking about names and
categories. The disease I have is like the platypus. It has so many things
wrong in so many body systems that it doesn’t fit into one category of
medicine. Who is the specialist when the immune system, neurological system,
endocrine system and metabolic system are all going awry? Instead of all seeing
their piece, doctors push the patient on in a merry-go-round of office visits
with each saying, “not my specialty.” When I searched for a doctor and a diagnosis,
I had quite a few tell me they knew what I had, but they don’t treat it.
Problem was the next doctor they sent me to said the same thing. <o:p></o:p></span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">How does a person find the experts for a disease when it
doesn’t fall into a manmade category of experts? Does this expose the flaw of
categorizing illnesses by body system affected? Is there another way to
practice specialized medicine without categories?<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And then there is the name and definition. This is also a
problem with my disease, so much so that the Institute of Medicine has taken up
a study to come up with a better definition (diagnostic criteria) and likely a
new name. A name is needed to communicate, express or convey accurate thought. But
the manmade term “chronic fatigue syndrome” does not accurately convey the
reality of the disease. For one, there are short bursts when I don’t feel
fatigue. It may only last four hours at the most, when it happens, but someone seeing
me during that time would think I have nothing wrong with me. They don’t see me
the days I can’t sit upright in bed for more than an hour, even having to have
my head horizontal. <o:p></o:p></span></div>
<span style="font-family: Calibri;">And fatigue, severe and coming and going, is not the only
symptom. This disease has at least 60 on the list (including insomnia), many of
which are also seen in other diseases and also vary patient to patient and
change according to disease stage. How do you define this disease? How do you
categorize it? Like the platypus, it’s parts of everything else and different in each patient.</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">If they knew the perpetuating cause of the multiple
dysfunctions and symptoms, we could put it into a category. Science has learned
much of what is going wrong, but hasn’t figured out why.<o:p></o:p></span></div>
<span style="font-family: Calibri;">What name do you give a disease that defies definition? “Maylgic
encephalomyelitis” is the second most common name (there are many others), yet
this focuses on the neurological when the immunological dysfunction may be the
bigger factor. I do not envy the 15 members of the Institute of Medicine study
committee who must find a way to distinguish this disease better than has been
offered by previous definitions. Some of the current diagnostic definitions or
disease criteria are better than others, but none are perfect, which is why the
Institute of Medicine is doing a study.</span><br />
<span style="font-family: Calibri;"></span><br />
<span style="font-family: Calibri;">In their recent public meeting, one of the members asked the public for suggestions on a name.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">One symptom that does seem to be noticeable is a delayed
exacerbation of symptoms after activity, either mental or physical. In most
diseases, exercise makes symptoms better. But 8-48 hours after what most people
would consider normal activity, I have a “crash.” It starts with a hoarse voice.
Next is fatigue, like I’m coming down with the flu. Then the headache. Then hot
and cold flashes. And then the nausea and vomiting. And the mental fog comes
amidst all of this. The more I push, the more I pay. If I stop and rest (lay
down for an hour or two), I might just have severe fatigue and mental fog for a
few days. It all depends on when I stop and rest and my ability on that day,
which varies. <o:p></o:p></span></div>
<span style="font-family: Calibri;">However, this symptom is seen in other diseases, but to a much
milder level. MS, RA and lupus have also had studies that document increase of
symptoms following physical stress. In fact, quite a few diagnosed with MS actually
have my disease and vice versa, studies show. So is the severity of this distinguishable
enough to define the disease? We will have to see what they come up with.<o:p></o:p></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 107%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"></span><br />
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 107%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">One thing is for sure, the medical care structure
demands the disease have a better name and definition and an assigned category
so patients can receive expert healthcare. Humans are driven to distinguish by
name and definition and categories. </span>Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com2tag:blogger.com,1999:blog-8378332272337029621.post-49731115035265824272013-11-11T23:15:00.003-06:002013-11-11T23:15:53.431-06:00Can you trust a blogger?<span style="font-family: Calibri;">Well, that depends. These days, everyone has an opinion and
Facebook and blogger sites are means for anyone and everyone to get their
opinion out to the public, including me as I am doing now. (Oh, the irony.)</span><br />
<span style="font-family: Calibri;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The days are long gone of the news media filtering what isn’t
relevant, what isn’t appropriate, what isn’t fa</span><span style="font-family: "Segoe UI Symbol","sans-serif";">ctual
and what isn’t important before it gets wide exposure. Used to be, whether it
was a news report, a commentary or an opinion letter, there was an editor who
made these determinations and decided what to put out and how.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">That
seems like ancient history now.<o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">Is
this return to information “wild west” days, as was seen in 18<sup><span style="font-size: x-small;">th</span></sup> and
19<sup><span style="font-size: x-small;">th</span></sup> Century newspapers, a good thing?<o:p></o:p></span><br />
<span style="font-family: "Segoe UI Symbol","sans-serif";"></span><br />
<span style="font-family: "Segoe UI Symbol","sans-serif";">It's both good and bad. The good is that information is now democratized. The
editors no longer have control. Power to the people! Give voice to the little
man, the vulnerable and the few with no powerful influence! No longer do they depend
on the judgment of an editor, have to pay for printing up fliers or go through
the effort of demonstrating in public places to be heard. A few clicks on a keyboard
and the whole world is exposed to what they have to say.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">But
some is bad. Publicly putting out information about other individuals,
companies, nonprofit organizations or agencies is taking on a responsibility.
It’s not the same as talking off the top of your head or sharing second-hand
information with your husband over dinner. <o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">Information
is power and misinformation is destructive power. <o:p></o:p></span><br />
<span style="font-family: "Segoe UI Symbol","sans-serif";"></span><br />
<span style="font-family: "Segoe UI Symbol","sans-serif";">Gladly,
even on the Internet, newspaper websites are very popular places for people to
get information, even more than blogs. Is this because they have more
information or better information? Is it more credible? Is it more interesting?</span><br />
<span style="font-family: "Segoe UI Symbol","sans-serif";">One
reason is that since the early 20<sup><span style="font-size: x-small;">th</span></sup> Century, newspapers have a
standard for verifying that the information they put out is accurate, and so
they are more trusted. One way newspapers add credibility to the information
they put out is to find out from the subject of a piece if the information they
have is accurate or to give them an opportunity to explain what they did and
why. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">Second-hand
information about someone is not credible and must be verified by that
individual. “If your mother tells you she loves you, check it out,” so the <a href="http://www.poynter.org/how-tos/newsgathering-storytelling/chip-on-your-shoulder/10039/if-your-mother-says-she-loves-you-a-reporters-cautionary-tale/"><span style="color: #0563c1;">journalism
saying</span></a> goes. And reporters who learn their trade in college hear many accounts
of the stories that seemed so clearly right end up being wrong, due to lack of
verification.</span><br />
<br />
<span style="font-family: "Segoe UI Symbol","sans-serif";">And
newspapers attribute where they got the information. Even if they use an
anonymous source, they describe why that anonymous source is reliable.<o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">And
fairness, courtesy and providing helpful information to readers requires that
the reporter give the subject of a story an opportunity to tell his side. It’s
also important for the reader to know this explanation so they too can act
appropriately or form a well-informed opinion.<o:p></o:p></span><br />
<span style="font-family: "Segoe UI Symbol","sans-serif";"></span><br />
<span style="font-family: "Segoe UI Symbol","sans-serif";">It
didn’t take long when I was the budding reporter to learn there are always two
sides to a story, and what I was told by one side was not always accurate. Or
sometimes what seemed wrong made a lot more sense when I talked to the other
side. Sometimes I misunderstood and was glad I got clarification. I found
sometimes I was given just part of the story. I found motives were questioned
because one side did not have all the information the other side did. When I spoke
to the one accused, the one whose motives were questioned, I found out what they
know, and then their actions made a lot more sense.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">Happened
again and again and again and again. <o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">When
I took on the responsibility of reporting (publicly giving information about
another) I gave up the luxury of believing second-hand information. I gave up
forming opinions after only hearing one side. This was not two friends gossiping
over tea. I took on a responsibility, a duty, and I tried to be responsible in
carrying that out.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">Recently,
a long-time Associated Press reporter put out story of a candidate based on
information in the deposition of a lawsuit. The person in the lawsuit was
identified by initials. The reporter was told by a second-hand source that the
person was the candidate with the same initials. It was defamatory.<o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">Did
he try to verify that, as journalism standards require? Halfheartedly. He called
the candidate or candidate’s people and didn’t get an immediate response. He
did not give them time to respond to his inquiry before sending in the story.
The editor trusted the judgment of this long-time reporter and put the story
out.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">They
were wrong. The story was wrong. The person mentioned in the lawsuit was not
the candidate, and they would have known that had they waited just two hours. <a href="http://www.timesdispatch.com/news/state-regional/government-politics/reporter-fired-by-ap-is-hired-by-mcguirewoods-law-firm/article_36516974-46fb-11e3-b901-001a4bcf6878.html"><span style="color: #0563c1;">The
reporter and two editors were fired.</span></a> <o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">This
incident shows that newspapers have standards that make their information more
credible.<span style="mso-spacerun: yes;"> </span>Even when the reporter did try
to go to the source, he did not live up to the standards because he put out
unverified defamatory information. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">Should
bloggers be held to the same standards? If they want to be seen as credible and
avoid being sued for libel, they should. If someone is reporting information to
the public about someone else, they become a reporter. Doesn’t matter if they
also include their opinions. Doesn’t matter if they do it in print, over radio
or by Internet or video. It’s the act, not the title or medium or pay that
makes someone a reporter. <o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">Recently,
one of my clients has been the topic of some bloggers. Some of the information is
defamatory and inaccurate. But what I can’t get over is that these individuals
were either making stuff up or reporting second-hand information without
verification or without contacting my client. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">Not
only is this damaging, but it distracts from my client’s work, it takes up time
and resources in my client determining how to respond, causes stress and
misleads the public. But above all of this, it hurts to the point of tears.<o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">Do
these bloggers not know the power they hold? Do they not know the responsibility
they have to verify before putting out this information? Do they not understand
the difference between reporting a supposed fact and giving opinions? Do they
not know from training or experience that second-hand sources are not reliable?
Do they not care about being fair? Are they really that calloused? Are they so
caught up in pushing their agenda that they just don’t care if they have it wrong?
Is it based on malice? Why would they not go to the source and verify or find
out why? If not courtesy or curiosity, wouldn’t fairness and sense of
responsibility require this?<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "Segoe UI Symbol","sans-serif";">If
my fellow reporters and other bloggers could share their insights on this,
please share them with me. It’s puzzling.<o:p></o:p></span></div>
<span style="font-family: "Segoe UI Symbol","sans-serif";">What
should the reader do? As I thought of answering this myself, I wondered what
others thought readers should do or not do when they see unattributed,
defamatory and unverified information in blogs. Should they pass it on? Should
they challenge the blogger? Or, should they just stop reading that blog? Or
does everyone know you can’t believe unverified information in blogs so it
doesn’t matter? What do you say?<o:p></o:p></span>Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com9tag:blogger.com,1999:blog-8378332272337029621.post-10384660476769235702011-10-07T01:40:00.006-05:002011-10-08T13:36:45.620-05:00What to do in Honor of Amberlin Wu<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">It’s been a tough week in ME/CFS land. Researcher / institute divorce and allegations of researcher fraud have left many patients disillusioned. I’ve seen many of my ME/CFS peers ask, “What do we do now?” Others have said they are staying away from social media, can’t take any more bad news.</span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">For me, the WPI / Mikovitz fall out was not shocking as the signs were on the wall, along with rumors passed in private conversations. Allegations of fraud were surprising to me, but are far from confirmed at this point. I hope two things: that the Ian Lipkin study into XMRV survives and comes to completion and that patients who thought they had a savior do not lose hope and make decisions which cannot be reversed. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">I have always advocated that all biomedical research is worthy of support and the demands of loyalty to one researcher are harmful. Now, I hope recent developments will win more patients over to this thinking. The researchers must compete for government funding and for public donations, but they should do so with professionalism and courtesy to their competitors. Shouldn’t patients do the same when advocating on behalf of a particular research effort? Most do. I hope more will bring courtesy and professionalism to how they treat all ME/CFS biomedical researchers and to other patients. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Remember what the Bible says, “Do not put your trust in nobles or in the son of earthling man, to whom no salvation belongs.” Humans often fail us, sometimes through no fault of their own. People get sick, people have disputes with partners, people allow their bias or greed to corrupt their judgment / motives and…… people die.</span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="separator" style="clear: both; font-family: "Trebuchet MS",sans-serif; text-align: right;"><span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKMEgRd2VsK75Zc7TBDfcwgwdxFwlkceEa02JYiOP4APgJK8or77JzY6nlzL74slTJ_RJ8YyN-lgRtF9Uxl_4vgmfN0h-9jHxWbMEezlaKOdmu1tSpA23EEaCbf1C3gahdaV-YRewbA25h/s1600/Amberlin+Wu.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKMEgRd2VsK75Zc7TBDfcwgwdxFwlkceEa02JYiOP4APgJK8or77JzY6nlzL74slTJ_RJ8YyN-lgRtF9Uxl_4vgmfN0h-9jHxWbMEezlaKOdmu1tSpA23EEaCbf1C3gahdaV-YRewbA25h/s1600/Amberlin+Wu.jpg" /></a></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">This brings me to my motivation for this post: the sad news that ME/CFS patient Amberlin Wu died earlier this week, the one piece of news that affected me emotionally. She was far too young to die, about 39 years old according to my estimation from her high school graduation date shown on her <b><a href="http://www.facebook.com/amberlin.wu?sk=info">Facebook profile</a></b>. But a September 27 post on her <b><a href="http://bealightcfsawareness.blogspot.com/p/words-from-my-tribe.html">blog, “Be a Light, CFS Awareness,”</a></b> reveals she had a bump (injury) on her head recently that was causing neurological problems, and she was discouraged by yet another challenge to her disease-filled body.</span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">I was first “introduced” to Amberlin through a <b><a href="http://www.youtube.com/watch?v=HQ8u1FWgxQ8">YouTube video</a></b> where she was interviewed with a friend concerning what it is like to live with ME/CFS. She showed some classic indications of ME/CFS that other patients will recognize: sunglasses even when in the shade and leaning her head against the wall for support. Otherwise, I was taken by her enthusiastic and fun-loving spirit coming through in spite of her energy-drained body. I was charmed by her transparent personality. I knew that if I ever met her, we would click.</span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">That was 2007. A few years later, I “saw” her again in another <b><a href="http://www.youtube.com/watch?v=c2Wfr7IpUE0">YouTube video</a></b> where she was filmed while trying an experimental treatment. This was a far different woman from the one I had seen earlier. Amberlin was in a hospital and described her recent relapse and showed her large rash. Yet, the spunky woman with the generous spirit allowed the world to peer into her moments of suffering as the medication gave her blow after blow as the hours passed by. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Now, I just had to know how this woman was doing. She had captured my heart, although we had never spoken to each other directly. Earlier this year, I finally “met” Amberlin through Facebook. Of course, I asked her current physical condition. I am embarrassed to say I don’t remember the details of her answer. But I do remember the lift my spirit felt every time I saw her active on the Internet. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Naturally, we all want to know what “caused” her early demise. We want to know so we can avoid the same fate or we can relax by determining that the chance of the same circumstances happening to us is remote. It’s human as we all do what we can to miss the darts of death as they seem to randomly hit targets all around us. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeSLY4KFSRGYybUp95W-h8Q0RQZNQNAAAu6UAezr6Tq9fVCO3qI8O1WD_vfviDep0Wc4cqQ9Wx6QgzdgngRJ47IPPEW6UWNJHW1i2L3ExlgsZkk-vA75UACkpc8h0jxBes5ecRZ8EpfDE_/s1600/Dancing+Shoes.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="260" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeSLY4KFSRGYybUp95W-h8Q0RQZNQNAAAu6UAezr6Tq9fVCO3qI8O1WD_vfviDep0Wc4cqQ9Wx6QgzdgngRJ47IPPEW6UWNJHW1i2L3ExlgsZkk-vA75UACkpc8h0jxBes5ecRZ8EpfDE_/s320/Dancing+Shoes.jpg" width="320" /></a>Instead of needling for curiosity sake, I have examined what I can do in honor of Amberlin. I took the time to look at all her <b><a href="http://www.facebook.com/amberlin.wu?sk=photos">photos on Facebook</a></b>. Not only did she have a good sense of humor in her “box” of illness; I also saw she was quite a ham. She found life and herself enjoyable even from her home after her condition got worse. I also saw she was very creative. She lost her career and could no longer dance, one of her great loves. But she still found ways to participate in life, through painting, making jewelry, raising fancy chickens and poetry. She also connected to people, including other patients. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">In honor of Amberlin, I believe all ME/CFS patients can imitate her. Can you find something enjoyable or meaningful or creative that you can do, despite your physical limitations? This will give your life meaning and leave a legacy. It fills the soul and gives you feelings of self-worth, an identity with accomplishments. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Can you find a way to be kind to fellow patients, even if you disagree with them? How terrible if we treat our fellow patients with aggressive and / or abusive words, and then they suddenly die. Other patients are not the enemy; public apathy is. </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><br />
<div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Can we share our humor, our joy and our love with fellow patients and family, in honor of Amberlin, the puppy in the mud who poked holes in her ME/CFS box and let her light shine through? </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><b><span style="font-size: small;"><a href="http://www.youtube.com/watch?v=yR8e6jR-Bog&feature=player_embedded">Please view a humorous video by Amberlin. </a></span></b></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><b><span style="font-size: small;"><a href="http://www.etsy.com/shop/muddipuppy?section_id=10240448">Please view Amberlin's artwork</a>.</span></b></div><div class="MsoNormal"><b><span style="font-size: small;"><a href="http://www.facebook.com/amberlin.wu?sk=photos" style="font-family: "Trebuchet MS",sans-serif;">Please view photos of Amberlin. </a></span></b></div>Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com6tag:blogger.com,1999:blog-8378332272337029621.post-60308556450223063292011-08-19T03:00:00.000-05:002011-08-19T03:00:55.442-05:00Dale Carnegie and Ghandi for ME/CFSME/CFS patients find themselves in a deep hole of darkness and despair. Trying to crawl out of that hole requires great courage in the face of ignorance, bias and worst, apathy. Imagine decades of spooning away the dirt to make progress while people pass over the hole concerned only with their own schedules and recreation. Oh, occasionally, a passersby will say, "So sorry to see you in that hole." And then to add insult to injury, literally, a person will say, "How did you get in that hole? What did you do? Why can't you get out?" It's even worse when someone says, "Maybe if I pour some dirt on you, you will get out of the hole."<br />
<br />
The frustration, the fear, the anger builds and builds. And there the ME/CFS person is, still digging away at the hole, trying to get out.<br />
<br />
Many children who suffer from neglect and abuse will channel that anger into destructive, unproductive behavior. They do things that hurt themselves as much as the object of their anger. And sadly, such behavior does not bring an end to abuse. It may even have the opposite effect of people thinking the problem is the child, or is as much the child. Have we seen something similar in the ME/CFS world?<br />
<br />
This does not have to be the case. With a little maturity and wisdom, and some worldly experience, many of the abused children become productive, not only for society, but to their own benefit. How many CEOs have come from disadvantaged circumstances? They have learned how to "make friends and influence people," to quote Dale Carnegie. They get people to do what they want them to do. Like Ghandi, Jesus and Martin Luther King, Jr., some have attracted people to their cause through moral principle and non-violent, but disruptive actions. They motivated, they inspired, they attracted sympathy and support because their behavior was honorable and respectful and their moral position was undeniable.<br />
<br />
Carnegie was an expert salesman, who influenced people to buy his products. Here is what Dale Carenegie has said that might benefit ME/CFS patients:<br />
<br />
Any fool can criticize, condemn and complain - and most fools do.<br />
Feeling sorry for yourself, and your present condition, is not only a waste of energy but the worst habit you could possibly have.<br />
Flaming enthusiasm, backed up by horse sense and persistence, is the quality that most frequently makes for success.<br />
If you want to gather honey, don't kick over the beehive.<br />
Instead of worrying about what people say of you, why not spend time trying to accomplish something they will admire.<br />
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.<br />
Our fatigue is often caused not by work, but by worry, frustration and resentment.<br />
The only way to get the best of an argument is to avoid it.<br />
The royal road to a man's heart is to talk to him about the things he treasures most.<br />
There is only one way... to get anybody to do anything. And that is by making the other person want to do it.<br />
Those convinced against their will are of the same opinion still.<br />
When dealing with people, remember you are not dealing with creatures of logic, but creatures of emotion. <br />
You can close more business in two months by becoming interested in other people than you can in two years by trying to get people interested in you. <br />
<br />
Ghandi, Jesus and Martin Luther King, Jr. changed the world through their firm adherence to a moral principle in the face of great opposition. Who could argue the unjust lynchings of black people in the South were atrocities, a terrible injustice? Yet, despite the horrible treatment of their peers, these leaders took the position of non-violence in their activism. Attention-getting resistance without anger, without violence, without threats, without weapons was the strategy. And in so doing, they brought attention to their plight, made their opposition uncomfortable, and created sympathy by acting with honor and dignity when abuse got stronger. They shamed their opposition and won friends in powerful positions, and ultimately, created the change they sought when those in power took pity on their cause.<br />
<br />
Ghandi liberated India from Britain rule, Martin Luther King, Jr. liberated black people from unjust laws and Jesus liberated people from oppressive religious laws. Sadly, some paid with their lives in the struggle. However, had violence been the method, would not more have lost their lives? As it was, the deaths were not at their hands, the deaths came from the hands of the oppressors, thus exposing their opposition as being morally corrupt.<br />
<br />
Interestingly, within their own supporters were many who advocated for the use of violence. It seemed to be the quicker method. Yet, these leaders knew that winning a physical struggle would not change the heart of man, which is what their ultimate goal was. And what is interesting is that battles set out to destroy by force are only temporary. Such victories survives only as long as the muscle is there. But when mankind's heart is changed to reject something as immoral, the society is changed, and that lasts for it is supported by the will of man and not force. <br />
<br />
Here's what Ghandi says that might help ME/CFS patients: <br />
A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history.<br />
Anger and intolerance are the enemies of correct understanding.<br />
First they ignore you, then they laugh at you, then they fight you, then you win.<br />
Non-violence is the greatest force at the disposal of mankind. It is mightier than the mightiest weapon of destruction devised by the ingenuity of man.<br />
Power based on love is a thousand times more effective and permanent than the one derived from fear of punishment.<br />
We win justice quickest by rendering justice to the other party.<br />
Anger is the enemy of non-violence and pride is a monster that swallows it up.<br />
When restraint and courtesy are added to strength, the latter becomes irresistible.<br />
<br />
Quotes from Martin Luther King, Jr.:<br />
Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom.<br />
Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.<br />
Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed. <br />
Human progress is neither automatic nor inevitable.... Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals. <br />
I believe that unarmed truth and unconditional love will have the final word in reality. This is why right, temporarily defeated, is stronger than evil triumphant. <br />
I have decided to stick with love. Hate is too great a burden to bear.<br />
Never succumb to the temptation of bitterness.<br />
Nonviolence is a powerful and just weapon, which cuts without wounding and ennobles the man who weilds it. It is a sword that heals.<br />
Peace is not merely a distant coal that we seek, but a means by which we arrive at that goal. <br />
The art of acceptance is the art of making someone who has just done you a small favor wish that he might have done you a greater one.<br />
The limitation of riots, moral questions aside, is that they cannot win and their participants know it. Hence, rioting is not revolutionary but reactionary because it invited defeat. It involves an emotional catharsis, but it must be followed by a sense of futility.<br />
We must develop and maintain the capacity to forgive. He who is devoid of the power to forgive is devoid of the power to love. There is some good in the worst of us and some evil in the best of us. When we discover this, we are less prone to hate our enemies.<br />
<br />
<br />
Other examples of those who caused change through non-violence, no threats, just resistance based on a moral principle: Desmond Tutu and the Arab Spring. History shows this method is successful.<br />
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All of these have created change through the power of their collective will, unity in goals and peaceful resistance. Sadly, some of the ME/CFS "advocacy" or "activism" has not been constructive, but destructive. It is set to tear down the opposers instead of change them. Some actions have actually created sympathy for the enemy instead of for the patients.<br />
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Thankfully, no real violence has occurred. So I speak metaphorically. Violent or threatening words, untrue allegations, are not in the spirit of those who successfully changed society. We do not have to resort to such tactics, because we can win on morality, we are right on the issue. We don't want people to lose jobs. We want the situation to change. Our fight is not against people, it is against bad policy, ignorance, apathy, injustice and incorrect information. <br />
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The challenge is that with so little energy and money, how can we be heard? How can we bring attention to the issue? One of the most successful campaigns I have seen is the email campaign of patients asking NIH officials: "What have you done for ME/CFS today?" It was non-threatening. It showed power by the sheer number who participated. And it was disruptive, it brought attention. Dennis Mangan even mentioned his mother was getting emails. And he promised some action, if only the emails would stop. A few months later, the NIH had a big researcher conference, where those who research in other areas got a good lesson on the status of ME/CFS science. <br />
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I ask my fellow ME/CFS patients to find advocacy and activism that builds the reality we want instead of destroys what we don't want. I urge them to say what change is needed instead of telling what is wrong. Focus on issues, not people. Tell what right actions you demand. Be loud. Be disruptive. But be strategic. Be wise. Be constructive. Attract. Inspire. Motivate. <br />
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It may feel powerful to take down the enemy. But, it is no victory if it pushes away many prospective allies. While it takes longer and requires more patience, changing attitudes through positive actions is much more powerful and long lasting. Resist the temptation of the illusion of power at the expense of real change. Don't throw stones as we then become known as stone-throwers and lose our moral authority.<br />
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We can get out of this societal hole we are in, if we continue to dig with our spoons and speak loudly and in unison. As with the examples above, we may attract those with real power to bring us out of our hole.Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com1tag:blogger.com,1999:blog-8378332272337029621.post-48527315488450352222011-01-21T09:58:00.000-06:002011-01-21T09:58:27.392-06:00Whittemore Peterson Institute Leads ME/CFS Research<span class="text_exposed_show">In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on October 8, 2010.<br />
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<a href="http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf" rel="nofollow" target="_blank">http://www.wpinstitute.org<wbr></wbr><span class="word_break"></span>/xmrv/docs/wpi_pressrel_10<wbr></wbr><span class="word_break"></span>0809.pdf</a><br />
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<a href="http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk" rel="nofollow" target="_blank">http://www.sciencemag.org/<wbr></wbr><span class="word_break"></span>content/326/5952/585.abstr<wbr></wbr><span class="word_break"></span>act?keytype=ref&siteid=sci<wbr></wbr><span class="word_break"></span>&ijkey=m3wzKT4yJqEyk</a><br />
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This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.<br />
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On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.<br />
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<a href="http://www.rescindinc.org/fdanihpressconf.mp3" rel="nofollow" target="_blank">http://www.rescindinc.org/<wbr></wbr><span class="word_break"></span>fdanihpressconf.mp3</a><br />
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<a href="http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html" rel="nofollow" target="_blank">http://www.cfscentral.com/<wbr></wbr><span class="word_break"></span>2010/08/fdanihharvard-xmrv<wbr></wbr><span class="word_break"></span>-study-same-thing.html</a><br />
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<a href="http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html" rel="nofollow" target="_blank">http://www.pnas.org/conten<wbr></wbr><span class="word_break"></span>t/early/2010/08/16/1006901<wbr></wbr><span class="word_break"></span>107.full.pdf+html</a><br />
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<a href="http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html" rel="nofollow" target="_blank">http://www.pnas.org/conten<wbr></wbr><span class="word_break"></span>t/early/2010/08/16/1007944<wbr></wbr><span class="word_break"></span>107.full.pdf+html</a><br />
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XMRV is similar to HIV, the retrovirus that causes AIDS.<br />
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Several countries have banned ME/CFS patients from giving blood. In many cases these bans are for life.<br />
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For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: <a href="http://www.wpinstitute.org/" rel="nofollow" target="_blank">http://www.wpinstitute.org<wbr></wbr><span class="word_break"></span>/</a><br />
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If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: <a href="http://www.facebook.com/note.php?note_id=160913563956987" rel="nofollow" target="_blank">http://www.facebook.com/no<wbr></wbr><span class="word_break"></span>te.php?note_id=16091356395<wbr></wbr><span class="word_break"></span>6987</a></span><br />
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<span class="text_exposed_show">For more information about the ME/CFS Worldwide Patient Alliance and efforts to increase awareness of this illness and the scientific discoveries, go here: <b><a href="http://mcwpa.org/">http://mcwpa.org/</a></b></span>Tina Tidmorehttp://www.blogger.com/profile/13980022042239573832noreply@blogger.com11