The Psychosomatic Researcher in the NIH's Big Chronic Fatigue Syndrome (ME/CFS) Study

[Beth]

An MEAction Post titled "NIH lead clinical investigator thinks CFS and fibro are somatoform" has raised a furious storm. It focuses on Brian Walitt- the lead "clinical investigator" in the NIH's Clinical Center study that involves almost 30 other researchers.

The post states:

[fright]View attachment 1012 [/fright]Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic.

In 2015, Walitt co-authored a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity of subjective experience and that of objective impairment.”

Similarly, in an interview with Family Practice News, Walitt described fibromyalgia as a “psychosomatic experience,” part of the “range of normal,” rather than an abnormal disease state; a way of “dealing with the difficulties of just being a human.”

Here is the video and a complete transcription of Dr. Walitt’s video interview “Fibromyalgia doesn’t fit the disease model” for Family Practice News.

Do you think Walitt should be involved in this landmark study? Leave your comments for the NIH below.​

A transcript of an interview with Walitt on fibromyalgia was also posted which has been interpreted to read that Walitts believes FM is not a disease, that patients are not sick, that the disease is all in one's mind.

Not surprisingly, the comments to that were both anguished and furious.

• "It shows how little you think of our disease and you have no intention of helping us at all."
• "It is proven to be biological and neurological. Not Psychological"
• "He is obviously not a specialist in this illness, or he would understand the connection to physical aspects."
• "This man cannot, I repeat, CANNOT, be a part of anything to do with our studies or our work."
• "Anyone who believes this is psychosomatic is themselves crazy and should not be on the panel."

One blog went so far as to assert that "Walitt really doesn’t seem to see a point in researching a biological basis for fibromyalgia" and called the study "PACE on steroids".

The Interviewee - the Family Practice Interview

There's no doubt that Wallit's strange interview is subject to multiple interpretations - some of them very upsetting. It's hard to understand. I propose an alternative interpretation to some of the more problematic parts of the short interview: that Walitt is talking about a narrative not a disease.

In the interview Walitt described FM as a difficult disease that the medical profession can’t help that much with. That theme - that the medical profession isn't very good at helping FM patients - runs throughout his work. Wallit has co-authored several papers suggesting that drug therapies provide little real help for FM patients and makes no bones about that. In fact, in another interview, Walitt asserted that "a return to a happy and pain-free life because of modern medicine" basically isn’t happening in FM. He stated:



[fleft]View attachment 1013 [/fleft]Walitt steps into touchy territory, however, when he posits that all experience is psychomatic experience.


Studies indicate that negative emotions or stress often worsen pain and other sensations, etc. and that's probably so for many people with ME/CFS or FM. It's not clear what Walitt means by "these things" when he states the mind is "able to create these things" but he does says that your brain is creating these sensations.

When Walitt talks about a "narrative" people can take to towards FM that can help relieve their suffering, I belief that he's talking an approach to the disease - not about the disease itself. He suggests one such a narrative might be that FM patients are "dealing with the difficulties of just being a human". Given his belief that there's little modern medicine can do to help FM, that approach makes some sense.

This perspective could be construed as being is similar to that seen in Buddhism where having an illness is simply part of being human. We're all going to be sick - have our bodies break down - whether earlier or later - at some point; i.e. this is one of the difficulties of being human.

Wallitt asserted that FM patients brains are creating sensations that are causing them pain and inhibiting them from doing what they want to do. That's inherently upsetting particularly to people in western societies who believe that good health is their god given right but Wallets asserts that that narrative is unhelpful in FM.

Instead of ignoring the pain Walitt suggests that FM patients should allow their behavior to be guided by it. That, of course, is the opposite approach to that suggested by some CBT/GET practices.

He suggests dropping the word sick which has negative connotations and adopting a different narrative that essentially says that bad things can change how our brains work…

​

It is without a doubt a strange interview. Walitt the researcher, however, is not nearly so problematic.

The Researcher

When you look at Walitt's body of work and, in particular, the paper cited a very different picture emerges, however. Walitt does characterize ME/CFS and FM as psychosomatic disorders but he does not believe they are psychological illness, or that behavioral therapies like CBT are very helpful. Instead he believes that pathophysiological changes in the brain triggered by an immune response are causing these diseases and he proposes that immune modulators are likely to be helpful. In short, he's walking a similar investigative path as Jarred Younger and other ME/CFS researchers.

Walitt has focused mostly on FM and rheumatoid arthritis. His FM prior work included a gene expression study that highlighted immune genes and study suggesting that FM should not be listed as somatoform disorder in the latest DSM revision. Other study topics include childhood maltreatment, SNRI effectiveness, SSRI effectiveness, brain white matter in GWS, PET scans of FM brains, another gene expression paper and symptom scales.

The Psychosomatic Approach

Walitt's statement that FM and chronic fatigue syndrome are psychosomatic disorders occurred in a paper tied Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy" which Walitt co-authored.

Chemobrain is akin the "brain fog" and "fibro fog" experienced in ME/CFS and fibromyalgia. The cognitive problems in ME/CFS and FM are similar, the paper proposes, to those found in chemobrain.



[fright]View attachment 1014 [/fright]The psychosomatic part comes from Walitt's observation that the cognitive impairment found on tests is more modest than one would expect given the issues cited by patients. That discordance between patient complaints and the results of objective testing is, the authors state, the hallmark of somatoform illnesses. (Overviews of cognitive testing in ME/CFS tend to describe the impairments found as relatively mild.)

The authors believe that the cognitive problems in ME/CS, FM and chemobrain:



They suggest that a variety of triggers including chemotherapy and psychological distress and others are able to trigger illnesses such ME/CFS and FM that alter perception.

Pathophysiological Disorders

The perceptual thesis, however, doesn't mean that these diseases are psychological. Walitt believes the perceptual problems he believes are found in ME/CFS and FM are probably caused by immune dysregulations in the brain and places the "psychosomatic disorders" such as chemobrain (and ME/CFS and FM) firmly within a pathophysiological construct. The authors believe that the

​

They propose that rapid shifts in cytokines lead to epigenetic alterations that essentially reprogram the brain. How this happens is not clear but the authors propose that cytokine changes begun in the body by the initial trigger get transmitted to the brain where they become permanent. They believe a common pathway in all these diseases exists.

They signal out the microglia as being key players but admit that they have no idea how they affect cognition. They list, though, a number of possible factors many of which many be familiar: glutamate induced damage, altering serotonin, dopamine, norepinephrine nerve transmission, GABA, acetylcholine, neuropeptides, and nerve growth factors (BDNF) increased levels of oxidative stress, nitric oxide.

Epigenetic changes which produce permanent changes to gene expression are the key. They point to research indicating that epigenetics play a critical role "brain development, memory formation, and more importantly, in regulation of learning and memory."

When turning to treatment they turn not to CBT or psychological therapies but immunomodulating drugs such as monoclonal antibodies (e.g. Rituximab), TNF-a reducing agents (etanercept), P2×7 antagonists, BDNF enhancers, S-adenosyl methionine (SAM), Betaine and histone deacetylases. They're exploring many of the same biological pathways that researchers exploring neuroinflammation and others posit are involved in ME/CFS.

Finally, in a paragraph that could be taken right of the study protocols for ME/CFS, they propose administering a "major physiologic stress" (e.g. exercise) and observing its biological ramifications to uncover the mechanisms at work.

Conclusions

In these complex and evolving areas it's best to assess researchers on their broad bodies of work. Because no consensus about the kinds of diseases ME/CFS and FM are has been reached in the medical community they're viewed in a variety of ways. It's interesting that researchers who may categorize the diseases differently may nevertheless largely agree on what might be causing them. Such is the complex world we live in.

[fleft]View attachment 1015 [/fleft]Walitt and his colleagues belief that whatever is happening in ME/CFS and FM is mainly altering perception may rankle. It's important to note, though, that Walitt does not propose altering disease beliefs or mindsets; the problems in these diseases are more entrenched than these simple solutions. Nor does he believe that one can push through these diseases; patients should allow the symptoms produced in them to guide them in their behaviors.

Instead what Walitt believes are causing these diseases, how he purposes to study them and how he proposes to treat them is broadly in line with much ME/CFS and FM thought. He proposes these diseases are immunologically caused and that immunological treatments will ultimately be used to defeat them. He also proposes that severe physiological stressors be employed to identify the mechanisms causing them. That's a study protocol, of course, that has been employed successfully in ME/CFS for quite some time.

Next Up - A Look at the NIH's Clinical Center Study

Cort, you know we appreciate you, but why are you making excuses for Mr. Walitt? M.E. has a medical basis. The fact that it affects us in every other way is no reason to ignore the basis and treat it cosmetically. For one thing, supposing the medical field has not been able to help us, but the psychology field can try, as Mr. Walitt says. Isn't that what they have tried to do with Karina Hansen in Denmark? Where is their success, and if it is successful why are they hiding it and hiding her? And wasn't Sophia MIrza also put in their care? Where is she? oops... dead. Just because medical doctors don't have answers for us, doesn't mean someone else can take pot shots at us, just because we happen to respond psychologically to what is happening in our body. The NIH has proven itself untrustworthy all the 30 years I've had M.E. I want to hear something new, or nothing at all.

 

[IrisRV]

What gave you the notion he was a psychologist? He is an MD (rheumatologist) with an MPH (masters of public health).

That may have been my fault. I said it earlier in the thread, but I was completely wrong and I did go back and correct it.

Dr Walitt is not a psychologist, he just plays one in the media. Seriously though, so much of what he says and writes sounds like a psychologist, it's not a difficult mistake to make -- especially with brain fog.

If it looks like a duck, walks like a duck, and quacks like a duck, then.... well, in this case it wasn't a duck! Can happen.

 

[ScottTriGuy]

If it looks like a duck, walks like a duck, and quacks like a duck, then...

Its a quack.

 

[Simon]

I think that interview is so muddled that it's hard to understand what he's saying but looked at one way - again a Buddhist way - this statement "we can’t restore them to what they think they should be" could be applied to any disorder. It's not a medical suggestion it's more of "How do you deal with a disease which the medical profession can't make go away?".

We certainly have different interpretations; the combination of what he said in the paper (not pathogenic) and what he said in the interview don't point that way to me, particularly his belief that "illness" is "when a person perceices atypical but normal human experience as a medical condition". Surely there is no Buddhist interpretation by which he means, "there is currently no cure for FM and we all need to learn to live with things [a real disease] we don't like". He contrasts illness with real disease, just to spell it out. So he isn't saying 'no current cure', but 'no diseaase to cure'.

I think if you take his position a bit further it might make more sense. He believes that the "subjective experience" of the patient is the key.

Going back to the chemobrain, he focuses on the mismatch between objective lack of problems and subjective experience as a defiining feature of somatoform illnesses. So he seems to be going well beyond just saying anything experienced is subjective by nature. He's questioning whether the problems are as bad as patients report.

I should say that I remain excited about the NIH study, which represents real progress. And I'm not looking for reasons to criticise NIH or Walitt: I'd be way happier if there was nothing to discuss.

At the same time I can't ignore what Walitt has said and written which I don't see can be interpreted any other way than he doesn't see mecfs as a real disease. I'd be happier if Walitt decided to leave the study, but I don't see that happening.

 

[tatt]

Haven't managed to read the whole thread so apologies if this has been said. I don't have a problem with him being a researcher but I do have a problem with him being the lead researcher. He's jumped to conclusions in previous studies without exploring, or even discussing. more than one reason for the findings. He seems to have ignored PEM in reaching those conclusions. Unfortunately experience shows that sometimes when people get an idea in their heads they defend it to the point where it undermines their reputation (PACE trial anyone?). We need someone prepared to consider all the possibilities.

 

[Cort]

Cort, you know we appreciate you, but why are you making excuses for Mr. Walitt? M.E. has a medical basis. The fact that it affects us in every other way is no reason to ignore the basis and treat it cosmetically. For one thing, supposing the medical field has not been able to help us, but the psychology field can try, as Mr. Walitt says. Isn't that what they have tried to do with Karina Hansen in Denmark? Where is their success, and if it is successful why are they hiding it and hiding her? And wasn't Sophia MIrza also put in their care? Where is she? oops... dead. Just because medical doctors don't have answers for us, doesn't mean someone else can take pot shots at us, just because we happen to respond psychologically to what is happening in our body. The NIH has proven itself untrustworthy all the 30 years I've had M.E. I want to hear something new, or nothing at all.[/QUOTED]

I guess you didn't read the blog either? Here's how this went for me. I was alerted to Dr. Wallit's statement and I immediately said "Well, he can't be on the study" - then I did what I always do. I read the research paper referred to in the post. When I say I read the paper I mean I read the whole thing. In that paper I found out that Walitt believes that whatever he calls ME/CFS and FM - that he believes they are immunological diseases, he proposes immunological treatments for them and he proposes that studies hit them with a physical stressor in order to uncover the mechanisms that are causing them.

I can understand yours and others believing that since Walitt calls these diseases psychosomatic that he believes they have no medical basis but that is not what his paper shows. The paper shows that he does believe that ME/CFS and FM do have a medical basis and that he hopes to uncover that medical basis and in doing so overturn current thought about these disease.

Along the way I found that Walitt does not believe CBT or FM drugs work very well. He's not a psychologist he's a rheumatologist.

You may call that making excuses but Beth I call that being thorough and fair ...

 

[Cort]

We certainly have different interpretations; the combination of what he said in the paper (not pathogenic) and what he said in the interview don't point that way to me, particularly his belief that "illness" is "when a person perceices atypical but normal human experience as a medical condition". Surely there is no Buddhist interpretation by which he means, "there is currently no cure for FM and we all need to learn to live with things [a real disease] we don't like". He contrasts illness with real disease, just to spell it out. So he isn't saying 'no current cure', but 'no diseaase to cure'.

Going back to the chemobrain, he focuses on the mismatch between objective lack of problems and subjective experience as a defiining feature of somatoform illnesses. So he seems to be going well beyond just saying anything experienced is subjective by nature. He's questioning whether the problems are as bad as patients report.

I should say that I remain excited about the NIH study, which represents real progress. And I'm not looking for reasons to criticise NIH or Walitt: I'd be way happier if there was nothing to discuss.

At the same time I can't ignore what Walitt has said and written which I don't see can be interpreted any other way than he doesn't see mecfs as a real disease. I'd be happier if Walitt decided to leave the study, but I don't see that happening.

But Simon - you've read the paper right? So how you did parse Walittt's suggestion the powerful immune drugs including drugs like Rituximab and Etanercept could be helpful ME/CFS and FM with your idea that he doesn't believe they are real diseases? I think you've misread pathogenic - actual damage to the neurons - and physiologic - altered neuroplasticity caused by immune activation.

He's not questioning if the diseases are so bad as patients report - he's asserting that the fact that patients report they are so bad as they are has biological significance - and he wants to get at that biological significance; he actually wants to prove to the world that these are biological disorders.

This reminds me of the Affordable Care Act imbroglio where one line of the Affordable Care Act - taken out of context - was used to produce a lawsuit that went all to the Supreme Court which found that that interpretation of line just didn't given the rest of the act.

I assert that your assertion that he doesn't believe ME/CFS is a real disease is either wrong or doesn't make sense or is simply irrelevant given the context of the rest of the paper; that ihncludes the way Walitt wants to study ME/CFS, the processes he believes are causing it and the treatments he suggests (powerful immune treatments that no one would toy with) to fix it.

That's what is most relevant in my opinion...

 

[tatt]

we have a researcher saying patients do not experience real cognitive problems, they simply think they do. That altered perception may be reversed by giving them immune drugs but we're just changing how they think there won't actually be a real improvement in the cognitive problems. Not surprising that isn't going down well. Why bother treating something that isn't a real problem. You don't give powerful drugs with side effects to people who dont have a problem, at least not in the uk.

I stumble to find words sometimes. I didn't do that before my illness. I have to lie down to think clearly. My friends say I didnt use to be like this. If objective tests can't measure that there is something wrong with the tests, not with my perception because my perception actually matches the perception of other people. Do we all have changed perception and the tests are right or is there something wrong with the way the tests were carried out? If we are all wrong and there is no objective change why do other people also think there is one - do we have to give them immune drugs with potentially serious side effects too? Or should researchers consider that if a lot of people disagree with them perhaps there is something wrong with their measurements.

 

[Cecelia]

.....Or should researchers consider that if a lot of people disagree with them perhaps there is something wrong with their measurements.

I definitely agree with this point! When your brain is too slow to keep up or manage, when "executive functions" become too poor to carry out normal tasks you did before, when you can forget anything, when thinking is hard work--like walking uphill in deep snow--, when your brain blanks out, when you no longer can do anything but the most simple form of arithmetic, when you have trouble remembering how to spell words, when your handwritten words often leave out some of their parts------there are so many examples-----you become too dysfunctional to keep your job or manage normal activities with your former competence or any adequate competence--that is when cognitive difficulties become life altering, major symptoms. And if easy, comfortable sit down tests, which are not timed, done when you are well rested, etc. do not seem to show those remarkable, life-changing difficulties you actually experience, then it is rational to conclude that the tests are inadequate to serve the cause!

Sometimes I think that even with my thinking difficulties I can still think better than those who are biased and won't see the truth. With low energy and inadequate mental power, I feel I am battling an interpretive bias which often WILL not, does not, want to see or know something that disconfirms its view of reality.

 

[tatt]

thanks to another thread I just came across this from George Davey Smith
Over the past 50 years many
psychosocial factors have been proposed and accepted as important
aetiological agents for particular diseases and then they have quietly been
dropped from consideration and discussion". The illustrations he cited
included cholera, pellagra, asthma and peptic ulcer. He went on to quote
Susan Sontag's well-known dictum: "Theories that diseases are caused by
mental state and can be cured by willpower are always an index of how much
is not understood about the physical basis of the disease" (Illness as a
metaphor. New York: Random House; 1978).

 

[serotone9]

My guess Serotone is that you didn't read the blog because I cannot understand how you would come to that conclusion if you read. Walitt believes that immune processes in the brain are causing these diseases. He has done all sorts of research some of which explores the physiological causes of FM and other diseases.

• Comparing Genomic Profiles of Women With and Without Fibromyalgia.
• Gene expression profiles of fatigued fibromyalgia patients with different categories of pain and catastrophizing: a preliminary report.
• Mortality in fibromyalgia: a study of 8,186 patients over thirty-five years.
• Increased brain white matter axial diffusivity associated with fatigue, pain and hyperalgesia in Gulf War illness.\Neuroimaging of Central Sensitivity Syndromes: Key Insights from the Scientific Literature.
• Lower brain-derived neurotrophic factor levels associated with worsening fatigue in prostate cancer patients during repeated stress from radiation therapy.
• Chemobrain: a critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy.

By the way, the other investigators in the intramural study are Ana Acevedo (physiatrist), Jeffrey Cohen (infectious disease & virology), Bart Drinkard (physical therapist), Luigi Ferrucci (geriatrician & epidemiologist), Penny Friedman, Fred Gill, David Goldstein (neurocardiology), Mark Hallett (neurology & motor control), Wendy Henderson (gastrointestinal immunology), Silvina Horovitz (neurology & motor control), Steve Jacobson (virologist), Eunhee Kim, Mary Lee (psychoneuroendocrinology), Tanya Lehky (electromyography), Jon Lyons (allergy), Eugene Major (virologist), Adriana Marques (Lyme disease, virology), Carine Maurer (neurology & motor control), Joshua Milner (T cells, allergy), Leorey Saligan (cancer fatigue), Stephen Sinclair (psychologist), Bryan Smith (neurology), Joseph Snow (neuropsychologist), Stacey Solin (nurse), Neal Young (immunology, bone marrow), Jay Chung (metabolism).

• I see one psychologist - probably to adminster questionnaires - and 22 other researchers. Instead of marginalizing ME/CFS they are actually kind of throwing the book at it physiologically speaking. I hope that relieves you!

That's my point exactly, Cort. They're throwing the book at it from every possible angle so at the end, the lead of the study -- a known psychologizer -- can say, "See? We studied absolutely everything and can't find a cause. It's all in their heads and the way they experience things!" Do you seriously think these researchers are going to come up with an actual cause? Not at all likely -- and originally that was okay, because the study looked designed to distinguish between actual somatoform disorders and ME/CFS, which has real physiological bases. Now it's becoming clear that that's not really the intention at all. The intent is to be able to say they studied everything and couldn't come up with any cause, so we can just try to deal with the symptoms. Maybe take a long walk and think it over, or change your illness beliefs, or go back to work (you lazy malingering slobs) -- maybe you'll feel better. It's like how they used to think that ulcers were caused by the mind, and well, there's nothing we can really do about that. We certainly can't cure that. Just drink some milk and avoid the spicy food. We'll just have to get used to the idea that there's no "cure" here.

Not sure what blog you're referring to, but I just read the interview from Walitt - straight from the horse's (or jack-ass's, it appears in the case) mouth. After first floating some B.S. about how we have to come up with the right "narrative" (narrative? what do we need a "narrative" for? Cancer doesn't have a "narrative." MS doesn't have a "narrative." Alzheimer's doesn't have a "narrative." They're diseases, and we treat them, period. No narrative required), he goes on to say some very dubious things, like this:

Dr. Walitt: ... People are not willing to accept the idea that our emotions affect our sensation, right, the idea that mind itself is able to create these things and that all experience is a psychosomatic experience. Nothing exists without your brain creating those sensations for you and the idea that that process of creation can create these things and is supposed to create things like this to inform us and to teach us and to guide our behavior pushes against the idea that we have free will and that we can do whatever we want and that we should be able to lead the lives that we have always thought we should lead–not the ones that our bodies are restricting us to.

Are you f*cking kidding me? That sounds like a philosophy seminar, not a medical explanation of ANYTHING. "Nothing exists without your brain creating those sensations for you." Great, so we'll just put people in a coma, and that will take away their cancer. That's what he just said: it doesn't exist if the brain isn't creating the sensation of it. Give me a fking break. He actually says, "The process of creation can create these things?" What the hell does that mean? It's circular reasoning at its finest (worst). It's called a tautology, in fact. "The process of snowing creates things made of snow." It says nothing. Just double talk to try to cover up the fact that he's saying FM and CFS are "all in the mind." How can they not be? According to him, EVERYTHING is in the mind! So when the person comes into the ER with a gunshot wound, we'll be happy to tell the person that it's really just all in his or her mind, including all the pain. It's just the way they are experiencing the world, as part of the wondrous nature of reality.

Great, that really solves a lot, doesn't it?

And so accepting those kind of ideas is not so easy–that might make it a little bit easier on everybody; that might be a more palatable narrative, understanding that, you know, people can feel bad for no real fault of their own, because of the circumstances of lives and how brains just work–the way it’s supposed to be–as opposed to being sick.

See? You're not really sick at all. It's just the way life and brains are supposed to work. It's just because of the "circumstances of life," not because you are actually sick. Just change the narrative, you'll be fine.

Don't you feel a lot better now?

There’s a wonderful line from this gentleman Joel Higgs, “When people are atypical, societies do one of three things: They either medicalize, criminalize, or moralize.” And so when you find people with thing like fibromyalgia, you’re either going to be sick, bad, or weak–and the idea is really to find a fourth way–to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human.

So there is no cancer, no autism, no diabetes, no influenza, no MS, no anything. It's all just part of life's rich pageant, isn't that wonderful, this great tapestry of life that gives us so many ways to experience things? How remarkable. Cancer? Nope, "you're just dealing with the difficulties of being human." Awww.

Unfuckingbelievable.

Interviewer: Brian, why did you title your talk on fibromyalgia as ‘Tilting at Windmills’?
Dr. Walitt: Well, I wanted to invoke Don Quixote’s quest to slay a dragon. Fibromyalgia is a very challenging thing for physicians to deal with and the idea that there are easy answers that can be prescribed to one’s patients is kind of a fallacy and I thought that that title would bring that out.”

Cancer is a very challenging thing for physicians to deal with, too. So they might as well just give up, because it's too hard? Can you honestly imagine a doctor saying that about any other disease? When it comes to FM/CFS, though, it's perfectly acceptable for this jack-ass to say that the search for answers is all just a fallacy. What are they studying it for, then? It's a fallacy that there will be any answers - it's just a futile quest, just tilting at windmills. He just said so.

Unless the reason is to come to exactly that conclusion - that there are no answers, so you'll just have to accept it. (Translation: "So go away and stop wasting our time.")

Interviewer: What are the difficulties of dealing with fibromyalgia?
Dr. Walitt: Well, as physicians, we have a limited amount of time in the office and our training is to use medications to deal with the problems that we see in front of us. And fibromyalgia as a disorder defies all of that. It requires a lot more time and medications do not work very well. And if you try to adhere to how we’ve been trained to treat people, you’ll inevitably fail.

So in case anyone thought I was being hyperbolic, Walitt actually comes right out and says it there, just so we can all be clear on it: "YOU'RE WASTING OUR TIME."

Notice how he doesn't blame the training, or the lack of medications (because of the lack of research in the cause/s), or the 5-minute to a patient medical model. No, it's all YOUR fault for having FM/CFS, not our fault at all. In other words, WE (the patients) are causing THEM (the doctors) to fail. We're failing the doctors. They're not failing us, it's we who are the problem leading to THEIR failure. And we all know how uncomfortable that makes know-it-all doctors, don't we? The obvious solution is to get rid of the problem leading to the failure - which he just admitted he thinks is the patient, not the doctor or his/her insufficient, weak, incomplete, and wrong training.

This man should have his medical license revoked.

Notice also how in any other disease, they will say, "the problem is that we really don't understand how XYZ molecule fits with this particular genetic encoded receptor function to produce the cancer resistance," or whatever it is. In other words, they acknowledge that their own ignorance is the problem, and the implication is that we should solve this thing that we're ignorant about so we can be more successful in treating it. Here, however, Walitt makes it perfectly clear: the problem is the patient. Not anything else. The problem is the patient and how the patient's presentation of illness causes the physician's training to fail.

The experience of fibromyalgia is very much real to the people who have it

Well, isn't that nice to know? It's real -- to the people who have it. The implication being that it's not real to anyone else. Because no doctor would EVER have to say that the "experience of cancer is very much real to the people who have it," or experience of Alzheimer's, or MS or any other disease, "is real to the people who have it." They are real! And his bias and horrendous bad faith and ignorance is further amplified by his use of the word "experience." It's not really a disease, it's just an experience. Like going to Disneyland, maybe. Just a normal experience. Some people have it, some don't.

What a total crock of sh/t.

The way that we think and feel is based in electricity and biochemistry of our brains and we don’t really understand how the physicality of that chemistry becomes our thoughts and feelings. And in people with fibromyalgia, they clearly feel these ways and there’s probably an underlying biology to it, but the idea that it’s an abnormal biology is less clear.

Just relax, everybody. The idea that ME/CFS, FM, etc. are abnormal isn't clear at all. You're actually perfectly normal, it's just a "way of experiencing" the world in a particular time and place and society. ME is normal. He basically just said it. "Doctor, why do I have ME/CFS?" "Didn't you see the NIH study? There's nothing wrong with you at all. It's just your illness narrative. You're perfectly normal!" (Now go away and stop wasting my time.)

We would love it if we could reduce all of these things to a simple pathway. You know, science has had all of its greatest successes in reducing problems to a single pathway, a single place and all the, you know, if you take diabetes, understanding the key role of insulin in diabetes, once that was understood, it transformed the whole illness and allowed for people to become better.

But why would you need to do that? Diabetes is "normal," isn't it? It's just a way of experiencing the world, just like everything else.

Except in this case -- surprise! -- he actually calls it an "illness." Well, what do you know about that? Something is finally an illness! Something that he has the answer to, what a coincidence. Until then, I guess it's all just a "normal part of being human."

Unreal.

The problem with things like fibromyalgia and other disorders that are of the neurologic systems of the brain is that the brain seems to have a duel existence. It exists both as a biological construct, but it also exists as sort of a psychological construct and we don’t really understand how the two go together yet, how they play together, how they sing together, how they work together–and so our attempts to alter biology without understanding the emotional overlay probably leads to a lot of failure. It speaks to our lack of understanding of how it really works.

Is this charlatan actually trying to claim that Parkinson's or Alzheimer's (both disorders of the neurologic systems of the brain, which he specifies he's talking about) are disorders that only exist because the brain has a "duel" (sic) existence? That we can't attempt to alter the biology of Parkinson's (by giving L-Dopa, for example) because we don't understand this alleged "dual construct" of the mind, and that our attempts therefore are destined for failure? Because we don't know how the biology and the "psychological construct" of Parkinson's "plays and sings together" (Lol, WHAT??)? Is he serious? If he attempted to claim that about Alzheimer's or Parkinson's he WOULD have his medical license revoked. Claiming that Parkinson's or Alzheimer's only exist because they are partly caused by a "psychological construct" and that we need to understand some alleged interplay between the psychological and the biological constructs is just completely bizarre. But it's perfectly fine to claim that about FM/ME/CFS. Why am I not surprised?

I actually wouldn't even object to this guy so much (and the delusional people who think like him) if they actually DID apply this clumsy, medieval, pseudo-intellectual thinking to everything: Alzheimer's, Parkinson's, cancer, AIDS, schizophrenia, MS, or any other disease. But notice how they always and ONLY apply it to FM/ME/CFS. And they do it to cover their own ignorance and to blame the victims as just being psychologizers who are "just experiencing their normal lives in a particular way."

I will repeat again: this Walitt person is extremely dangerous -- deranged, I would even say -- and should be removed from this study.

 

[Cecelia]

if our lives hinged on this particular study, I would be more concerned and upset than I am. We have other more knowledgable researchers working away on this puzzle from a lot of different angles. We'll see which horse finishes first. I don't think the CDC or NIH is the nimblest of runners. I am more hopeful than I have yet been that ME/CFS is going to be figured out. I think it is already possible, even if it hasn't yet happened. We are not going to be left forever with no help. I have had this illness for twenty years and this is the first time I have stated that I believe we have hope.

 

[weyland]

if our lives hinged on this particular study, I would be more concerned and upset than I am. We have other more knowledgable researchers working away on this puzzle from a lot of different angles.

If the NIH study fails to find anything interesting, or worse, finds that CFS patients look no different than psychogenic FMD patients, I worry that the extramural NIH research budget for CFS would not be increased anytime soon. This would leave our knowledgeable researchers stuck where they are now, with a ton of interesting research plans and no money to execute them.

 

[Nina]

Anyone familiar with this? I just happened on it on fb.

https://www.mailman.columbia.edu/pu...igue-syndrome-biological#sthash.qKenOFtn.dpuf

 

[Cecelia]

Good link @Nina ! About those sick for longer than 3 years, I hope researchers can also find biomarkers as they did here for the under 3 yr group. It seems clear that Hornig etc. understand that those sick longer than 3 years still have ME/CFS.

 

[serotone9]

If the NIH study fails to find anything interesting, or worse, finds that CFS patients look no different than psychogenic FMD patients, I worry that the extramural NIH research budget for CFS would not be increased anytime soon. This would leave our knowledgeable researchers stuck where they are now, with a ton of interesting research plans and no money to execute them.

I agree with that. Once NIH does this study with its comprehensive panel of researchers, and then Walitt concludes it all by saying that it's all within the normal range of experience and it's just people's "interpretation" of their condition that's causing their problem, it's game over for any more government funded research. The search into a biologic or physiologic cause is going to be seen as unnecessary and pointless, because the official cause according to Walitt is going to be your mind and how you are choosing to interpret or experience "normal" human internal and external events.

And in people with fibromyalgia, they clearly feel these ways and there’s probably an underlying biology to it, but the idea that it’s an abnormal biology is less clear.

So it doesn't matter what the underlying biological reason "probably" is, whether it's an immune irregularity, an HPAA or autonomic dsyfunction, or anything else. According to Walitt's view, all that is within the range of "normal," and it's only your interpretation of those irregularities that's making you feel like you're sick, not the irregularity itself. It's all in your mind.

And that undoubtedly is NIH's aim. They don't want to keep spending money on something no one has been able to solve for 30+ years. They want to sweep this problem under the rug by doing a comprehensive study and then slapping a psychogenic label on the findings so they don't have to deal with it anymore. Who knows how much of a setback to research that's going to cause, not to mention the social consequences to every patient who has ME/CFS by being branded as a psych case. If someone doesn't think their life hinges on a study like this, ask Karina Hansen how a psychogenic mindset worked out for her.

 

[serotone9]

When Walitt talks about a "narrative" people can take to towards FM that can help relieve their suffering, I belief that he's talking an approach to the disease - not about the disease itself. He suggests one such a narrative might be that FM patients are "dealing with the difficulties of just being a human". Given his belief that there's little modern medicine can do to help FM, that approach makes some sense.

This perspective could be construed as being is similar to that seen in Buddhism where having an illness is simply part of being human. We're all going to be sick - have our bodies break down - whether earlier or later - at some point; i.e. this is one of the difficulties of being human.

He's actually doing both -- talking about an approach to the disease so that patients can deal with something that medicine can't, and talking about the disease itself as a way of dismissing it as a legitimate organic illness or physiologic disease process.

Edit: Actually, after coming up with the tv analogy, I think it's just easier to say it this way:

"There's no doubt that people who experience cancer think it's real. There might even be something biological happening, but we can't even say that's abnormal. It's just another way of experiencing life, something created by the mind and the mind's natural way of experiencing certain aspects of human reality. We need to shift the narrative to let people know there's nothing really abnormal about having cancer or what they're experiencing at all. Everyone gets sick and dies, so patients shouldn't think that there's anything really wrong with them. Besides, it takes a lot of time and effort to treat these patients, the medicines don't really work well, and the doctors who treat them are destined for failure. So we shouldn't even think in terms of curing them -- thinking there's going to be some kind of cure is futile anyway. It's all just tilting at windmills."

Is that acceptable to anyone? What do you think the public would say about a lead NIH cancer researcher who said that having cancer was perfectly normal, so we should give up on cures, change the narrative to say there's nothing abnormal going on, and just let the people die? We all die anyway, right?

I don't know anyone in his or her right mind who would defend such a bizarre notion. This guy would be out on his ass if he said anything like that about cancer, or any other disease other than ME/CFS. It's borderline criminal.

 

[emilyc]

I think a large part of the problem is that tests that are used to asses cognitive dysfunction in ME/CFS aren't accurate for this disease. They're designed to measure cognitive function over a short period of time, Usually an hour or less. The nature of the disease is that we can (all but the most severe) function relatively normally for a short period of time. But we can't keep it up all day or all week. And we usually are less functional for awhile as a result of being tested. Analogous to exercise testing. But this is a very unique feature to this disease and one has to understand the disease to see this problem.

If cognitive testing of ME/CFS were able to measure over days, weeks or months, I think the results would be much closer to patient reports.( If there were a way to measure against pre-illness baseline, that would help a lot too. I feel like doctors often assume we're functioning fine, just not very bright.) With an accurate measure of cognitive function over time, the massive discrepancy between reported and measured symptoms wouldn't exist and the perception argument as well as the rest would fall apart.

P.S. The fact that I wrote this doesn't mean I can be trusted not to leave the burner on.

 

[Cort]

He's actually doing both -- talking about an approach to the disease so that patients can deal with something that medicine can't, and talking about the disease itself as a way of dismissing it as a legitimate organic illness or physiologic disease process.

Edit: Actually, after coming up with the tv analogy, I think it's just easier to say it this way:

"There's no doubt that people who experience cancer think it's real. There might even be something biological happening, but we can't even say that's abnormal. It's just another way of experiencing life, something created by the mind and the mind's natural way of experiencing certain aspects of human reality. We need to shift the narrative to let people know there's nothing really abnormal about having cancer or what they're experiencing at all. Everyone gets sick and dies, so patients shouldn't think that there's anything really wrong with them. Besides, it takes a lot of time and effort to treat these patients, the medicines don't really work well, and the doctors who treat them are destined for failure. So we shouldn't even think in terms of curing them -- thinking there's going to be some kind of cure is futile anyway. It's all just tilting at windmills."

Is that acceptable to anyone? What do you think the public would say about a lead NIH cancer researcher who said that having cancer was perfectly normal, so we should give up on cures, change the narrative to say there's nothing abnormal going on, and just let the people die? We all die anyway, right?

I don't know anyone in his or her right mind who would defend such a bizarre notion. This guy would be out on his ass if he said anything like that about cancer, or any other disease other than ME/CFS. It's borderline criminal.

I actually just communicated with an ME/CFS patients who's done very well with Walitt. It is a difficult distinction but she said the doesn't believe some sort of injury has occurred but that the body is functioning very poorly - because of physiological issues -and as I tried to point out - one the papers he co-authored posits a physiological cause to ME/CFS and FM and suggests that immune treatments could help.

I think you're missing the point on cancer. If you look at Walitt's studies he's done numerous studies assessing the effectiveness of drugs on FM. In each one he's found them to be quite ineffective for most people. I can't remember the number needed to treat to get a good response but I remember that it was huge.

Cancer is a completely different situation; cancer drugs can actually cure cancer and, of course, you're going to die if you're going to use them. That's very different from saying that because my studies show that drugs aren't that helpful then don't expect too much at this point from them.

 

[Cort]

If the NIH study fails to find anything interesting, or worse, finds that CFS patients look no different than psychogenic FMD patients, I worry that the extramural NIH research budget for CFS would not be increased anytime soon. This would leave our knowledgeable researchers stuck where they are now, with a ton of interesting research plans and no money to execute them.

I certainly understand that fear.....I would note though that most of our research studies are finding things now and Ron Davis thinks researchers are digging too deeply not to find something. I imagine that the studies will find things. I can't imagine for instance that the brain imaging studies won't - they have in the past. Cytokines and immune factors seem to be a crapshoot (lol), but the ANS studies are really consistent. The exercise studies are huge - I would be shocked, though, if they didn;t find something - if the studies are done right...They've had consistent results as well.

Still I agree that this huge; it could set forward the field or even set it back (in some places)- depending on what the results are.