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.

Tuesday, March 17, 2015

Please Don't Let it Die

Have 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.

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.

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.

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.

It's not about immigration
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.

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.
  • 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.
  • The fear was that they would not recognize PEM as the primary identifying symptom. But they made PEM a requirement in the criteria.
  • 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.
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.

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?

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?

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?

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.

A lot is at stake
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.

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.

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?

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.

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.

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?

I'm worried
This concern actually made me anxious a few days ago. Will this opportunity pass, leaving us in gridlock more decades?

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.

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.

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.

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.

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.

Saturday, March 14, 2015

The 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.

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?

Jennie Spotila did a pretty good job of assessing the new SEID criteria and some questions it raises. So I made a comment on her blog. 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).

SEID criteria requires three things:
  • Loss of function accompanied with fatigue
  • Unrefreshing sleep
  • Post-exertional malaise
Then it requires at least one of the following: orthostatic intolerance or cognitive dysfunctions.

But what about the Canadian Consensus Criteria and Fukuda?
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.

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.

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.

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?

Too loose or too tight?
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.

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.

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:
  • Fatigue
  • Post-exertional malaise
  • Unrefreshing sleep 
  • Symptoms for six months in adults
  • Loss of function (reduced activity)
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.

Symptoms required in CCC but optional or not included in SEID criteria:
  • Pain
  • Neurocognitive dysfunction (2 types)
  • Two symptoms that would fall under either immune system dysfunction, autonomic dysfunction or neuroendocrine dysfunction.
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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

The power is in the guide.
The Institute of Medicine ME/CFS Committee clinician's guide 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.

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.

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.

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.

Please rename PEM.
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.

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.

First, "post" only means afterward. It connects by sequence and does not indicate cause or timing.
"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.
"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.

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.

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.

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.

Saturday, February 14, 2015

The 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.

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).

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.

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.

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.

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.

Still, despite my feelings, I will support this change. I'll tell you why in a moment.

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.

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.

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.

SEID - systemic exertion intolerance disease

What I like: "systemic," "disease" and "intolerance."

"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."

"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.

"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.

What I don't like: "Exertion."

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."

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."

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.

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.

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.

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.

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?

Why am I supporting the name change anyway? 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.

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.

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.

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.

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.

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."

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.

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.

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.

Besides, I like three out of four of the words, and it is better than "CFS."

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.)

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.

I'll take a break now and give you a break. I will blog soon about the other changes and features in the report.

Sunday, February 2, 2014

Name It, then Put It into a Box, It's Human Nature

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.

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.

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.)

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.

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.
As a communications specialist by trade, I analyze words and their definitions daily.
However, some categories go beyond the natural groupings. And some things defy definition, so finding a good name to distinguish it will be imperfect.

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.

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?

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?
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.
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.

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?

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.
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.

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.
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.

In their recent public meeting, one of the members asked the public for suggestions on a name.

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.
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.

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.

Monday, November 11, 2013

Can you trust a blogger?

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.)

The days are long gone of the news media filtering what isn’t relevant, what isn’t appropriate, what isn’t factual 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.

That seems like ancient history now.
Is this return to information “wild west” days, as was seen in 18th and 19th Century newspapers, a good thing?

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.

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.
Information is power and misinformation is destructive power.

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?
One reason is that since the early 20th 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.

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 journalism saying 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.

And newspapers attribute where they got the information. Even if they use an anonymous source, they describe why that anonymous source is reliable.
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.

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.

Happened again and again and again and again.
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.

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.
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.

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. The reporter and two editors were fired.
This incident shows that newspapers have standards that make their information more credible.  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.

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.
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.

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.
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?

If my fellow reporters and other bloggers could share their insights on this, please share them with me. It’s puzzling.
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?

Friday, October 7, 2011

What to do in Honor of Amberlin Wu

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.

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. 

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. 

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.

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 Facebook profile. But a September 27 post on her blog, “Be a Light, CFS Awareness,” 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.

I was first “introduced” to Amberlin through a YouTube video 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.

That was 2007. A few years later, I “saw” her again in another YouTube video 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.  

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. 

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. 

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 photos on Facebook. 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. 

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. 

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. 

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?