Wednesday, February 8, 2017

IOM Implementation: What's Missing (besides the name change)

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.
  • They recommended a new clinical criteria.
  • They recommended a new name.
  • They recommended a new diagnostic code with the new name.
  • They recommended more research funding.
  • They recommended a health provider education/dissemination campaign.
  • They recommended the government set up a screen/diagnostic toolkit for clinicians.
  • They recommended that the criteria be reviewed again in 5 years for any changes science my dictate are needed.
 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.

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.

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.

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.

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.

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.

And likely the toolkit will be useful in medical provider education. The IOM gave much detail on opportunities of dissemination and education.

In the text, one of the suggestions for getting this done is this:

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.
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. 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. One of the biggest problems we have is lack of knowledgeable clinical care and misperceptions among medical providers and the public.
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:

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?

Wednesday, January 18, 2017

It's the Name, the NAME, THE NAME!

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.

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?

The recommendation is:
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.
The response from the CDC was:
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. 
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.
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 disease with exertion intolerance is different?"
Uhh, maybe call it something different? I know! I know! I know! Let's call it "exertion intolerance disease." (This post may be dripping with sarcasm. I've had my fill lately.)
Notice what I found is the definition of (purpose for a) "name":
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). 
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.
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.

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?
ME for one? CFS-with PEM for the other? and CFS-Fukuda for the third?
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?
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.)
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.

(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).
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 exertion intolerance.

Monday, January 9, 2017

Walitt Invited Shorter and Nath Approved Him

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.

Dr. Avindra Nath, the NIH official leading the new clinical study on ME/CFS, was there on that patient conference call, coming in late. In fact, you can listen to it or read the transcript here.

When patients found out about this from someone not at the NIH, advocates sent out the alarm. One of them was Jennie Spotila. She wrote a blog 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).

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.

Koreshetz, sent a response.

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.

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. 

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.

And, they responded with the following:
“The recommendation to invite Dr. Shorter to speak at the NIH last month was made by Dr. Brian Walitt of the NINR.  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."

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:

·       The IOM report was an “embarrassment . . . valueless, junk science at its worst.”
·       “Nothing has changed since then [1992] in scientific terms. There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be.”
·       “[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.”
·       “[I]n the several [IOM] public hearings the CFSers appeared in mass to pour out their tales of woe.”
·       The public hearings were a circus, with moaning and groaning victims right and left.”
·       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.”
And I then asked Dr. Nath other questions. (Dr. Walitt was sent similar, some the same, questions):
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?
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”?
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?
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?
5. Did you attend his presentation?
6. If 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?
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?
8. Which parts of his presentation do you think might contribute to your team’s better understanding of ME/CFS?
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?

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:

Dear members of the ME/CFS community,

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. 
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. 
Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2nd.  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.
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.
The Trans-NIH ME/CFS Working Group

This led me to ask more questions:
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?
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?
I also pointed out that most of my questions were not answered:
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”?

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?
3. Did you (Walitt and/or Nath} attend his presentation?
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 ME/CFS?
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? 
6. Which parts of his presentation do you [Walitt and/or Nath] think might contribute to your team’s better understanding of ME/CFS?
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?

I asked if I should expect an answer to these questions.

I was told to use the previous response. (That means no.)

In emailing Ms. Emr, I explained why inviting Shorter is so confusing to patients, especially in light of the new effort we've seen at the NIH in relation to ME/CFS:
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?

What Now?
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 the call.

The next call for patients is February 1.

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.

Thursday, November 24, 2016

Be Careful; But SEID Will Still Make You Pay for that Vacation

Leading 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?

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?

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.

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:
  • I added a couple days to the trip so I would not be trying to see it all and doing too much
  • I arranged for wheelchair transport in connecting to the second flight, both coming and going, reducing the walking in the very big Atlanta airport.
  • I scheduled at least 3 hours of rest (either lying down in the pool or in the bed) every day.
  • My husband pushed me in a wheelchair at the museums (they have them there).
  • I took ibuprofen just about the whole time.
  • Stayed at a motel with four restaurants within 2 blocks, one across the street.
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?

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.

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.

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.

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.

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.

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.

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?

He does know. But he said he sees similar vacation-related patterns in his other patients with this disease.

Lessen learned: Don't plan any commitments for 2 weeks after a vacation.

Saturday, November 5, 2016

It's not the Scandal. It's the Cover-up

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.

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.

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.

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).

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.

So I ask you:
Why was this speaker event (topic of history of ME/CFS) not revealed to the ME/CFS patients in the call?
Did any of the NIH personnel involved in the "keep patients informed" call know of this speaking event?  If not, why not?
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?

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.

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.

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.

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.

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."

I work in communications/marketing/PR. I recommend you get some good advice from someone in the industry who specializes in crisis communication.

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.

Saturday, April 23, 2016

Since It's Multiple Choice, I'll Pick SEID

Those 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.

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."

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.

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.

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.

So, for patients, we now have a multiple choice:
1. "chronic fatigue syndrome" because it's the name our doctor and public recognizes, but which we hate and misleads people about our disease?
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?
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?
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.

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.

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.

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.

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.

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."

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.

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.

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.

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.

And I refuse to accept the label of "CFS" on my disease. It's wrong, simply wrong.

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."

Saturday, October 10, 2015

How to Accept Limitations - Finding the Right Analogy

The 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.

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.

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.)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Now, I must end here because my baby needs some rest.