Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?

NIH has tapped Dr. Brian Walitt as the lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome.” (For terminology, please see the end of the post.)

Investigators

Walitt_PictureOnly a few months ago—in September 2015—Dr. Walitt gave an interview at a rheumatology conference about his conference presentation on fibromyalgia: “Tilting at Windmills (a rational approach to fibromyalgia).” Rarely have I seen anything less rational than Dr. Walitt’s interview. You simply must watch it because those nine minutes will make you wonder if you mixed up your thyroid meds with some left-over Quaaludes. There is not even a pretense of scientific thinking. The interview illustrates what NIH has in store for us. Watch it, really let it sink it and then tell me that it doesn’t scare the pants off of you. Share it!

Walitt’s claims lack even an inkling of science. In the demeanor of a hokey cult leader, he lays out his horrifying *beliefs* about fibromyalgia. Walitt *believes* that fibromyalgia is not a medical entity (because, you know, he can’t find anything wrong with fibromyalgia patients), that patients’ symptoms are merely part of a normal human existence (because, you know, mind-body connection), that patients are meant to have these symptoms, so that they can learn a lesson (because, you know, hardcore science needs more mindfulness), that it’s perfectly acceptable not to treat patients (because, you know, that will do them no harm and whining to your doctor, or “complaining” as he calls it, is just not very considerate) and that it’s just better for *everybody* that way (because, you know, doctors only have very limited time for each patient and medications don’t work well in fibromyalgia). As a result, Walitt really doesn’t seem to see a point in researching a biological basis for fibromyalgia. If you are wondering why he is doing research at NIH in the first place, don’t! None of this is apparently required to make any sense, except if you take into account that he’s quoting a psychiatrist. According to Walitt, “traditional medical diseases will eventually show themselves objectively.” BUT NOT IF YOU DON’T CONDUCT ANY UNBIASED RESEARCH ON THEM!

In short, according to Walitt, fibromyalgia is not a disease, or an illness; it’s just a story patients tell themselves and others—an incorrect interpretation of their perceptions—that Walitt is here to help interpret. One of his slides claims: “Fibromyalgia is our modern narrative for a range of persistent, distressing, and stereotypical sensory experiences.”

Walitt_What_is_Fibromyalgia

Walitt’s calm, collected and almost pleasant demeanor while presenting the most horrendous theories is chilling. He appears caring and compassionate while seemingly devoted to disappearing fibromyalgia as a medical entity. I say “almost pleasant” because there is something extremely disturbing about Walitt’s delivery in this interview.

Let’s look at what he said exactly:

The most important thing to do is to listen, right? … We can’t restore them to what they think they should be. [not audible] We should bear witness to their difficulties, which is the oldest of the jobs that physicians do. [emphasis added]

Right off the bat, Walitt shows a judgment about the patients’ expectations, disguised as pretend compassion expressed when Walitt stresses the importance of listening. Patients want scientific progress—not witnessing of our suffering—thank you very much.

What Walitt is really saying is, “How dare patients wish not to be sick?!” Never mind that they might be so debilitated that they can hardly do anything and have no quality of life, because they just think they shouldn’t be suffering.

In response to the question of what fibromyalgia is, Walitt said the following:

… fibromyalgia appears to be a way that people experience suffering in their body. Um, both from the way that the bodies are interpreted and the problems of the body, as well as the problems in their lives, as well as how societies tell us how to experience things. All those come together to create a unique experience in different points in time, and right now, that experience, um, is a, one of those experiences is fibromyalgia. Ah. Is it a disease? Or is it a, uh, a normal way that we handle and are supposed to work is still to be determined. But it’s quite possible that the (frowns) tricky way that the brain works, is that we may create symptoms as part of how we’re supposed to operate, as opposed to this representing the system breaking down. [emphasis added]

Instantly, despite the vague delivery, Walitt demarcates his path of normalizing pervasive, extreme, life-altering pain and other symptoms by way of a description that sounds like some religious teaching, definitely not science. According to him, fibromyalgia, while atypical, is—wait for it—normal.

Why conduct any bio-medical research if suffering is just meant to be?

Here is more:

The idea that mind itself is able to create these things and that all experiences are psychosomatic experience. Nothing exists without your brain creating those sensations for you. And the idea that, uh, 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, ahem, 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 leave [sic], not the ones that our bodies are restricting us to. Uh, and so accepting those kinds of ideas, ahem, is not so easy, but that might make it a little bit easier on everybody. It might be a more palatable narrative, uh: understanding that people can feel bad for no real fault of their own, uh, because of their circumstances of lives and how brains just work—the way it’s supposed to be, as opposed to being sick. There is a wonderful line from this gentleman, Joel Higgs [sic]: “When people are atypical, society do one of three things: They either medicalize, criminalize or moralize [Smiles]. And so, when we find people with things like fibromyalgia, they are either gonna 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 are not sick, bad or weak, that you are just dealing with the difficulties of just being a human. [emphasis added]

Walitt declares *all* experience psychosomatic, riffs on the educational and spiritual value of symptoms, and applies the work of psychiatrist Joel Nigg to the puzzle of fibromyalgia (though he gets the name wrong).

He suggests that fibromyalgia patients should accept his narrative that their symptoms are part of a normal life, triggered by life’s “difficulties.” Ironically though, instead of medicalizing (definitely not that), criminalizing or moralizing, Walitt psychologizes like it’s nobody’s business. It’s really just his way of saying, “There is nothing wrong with you. So, now pull yourself together and get on with life without continuing to burden the health-care and disability systems.”

Imagine he had said this about cancer patients, that cancer is meant to inform, teach and guide them. Petrifying right? And yet, he said it—about fibromyalgia— unapologetically and entirely comfortably, almost proudly. How can somebody like that possibly be expected to be looking—in an unbiased way—at a disease that is considered closely related to, and overlapping with, fibromyalgia?

Also note that Walitt attaches a thinly-disguised judgment to fibromyalgia patients’ discontent with their “normal” experience of being sick, and thus, contrary to what he says, moralizes plenty. After all, it would be so much easier for everybody—translation: for him and doctors of the same ilk—if patients stopped complaining.

Walitt_Patient_FM

Those complaining middle-aged women really are pesky, aren’t they?

For Walitt, no further research is necessary, because he knows what he knows or so he says. Rather than rising to the challenge of finding answers, his main goal appears to be helping other doctors sink to his level of disbelief, as he explains here:

One of the interesting things about this talk is that people come in with a set of beliefs and a lot those come from what they’ve been taught and what they see on television and what their patients come to their offices with. Sort of these ideas of, you know, fibromyalgia is a disorder of sensitive nerves.

But it’s a narrative that doesn’t seem to be valid and the hope is, and physicians, as they see me talk, often start off using that narrative and believing in the narrative and answering the questions in terms of the narrative, but deep down they know that it’s not true. And by the end, after I say my message, um, they are relieved to hear that deep down their believes are not wrong and that really what may be required is not, uh, saying that fibromyalgia is not real, but finding a new narrative in which to discuss it, one that makes much more sense, uh, to everybody. [emphasis added]

Walitt flat out asserts that fibromyalgia is not a “disorder of sensitive nerves,” presumably based on the fact that his research has failed to bear out such a disorder. No big surprise there because he clearly has his mind made up and isn’t really looking for any biological cause or marker for fibromyalgia.

Basically, Walitt claims that physicians who “believe” in fibromyalgia as a dysfunction of the nervous system have been duped into doing so by their patients and by watching television. (Clearly, he can’t be talking about medical school here since one is unlikely to find any meaningful education about fibromyalgia in med-school curriculums.) Those tortured doctors, he says, feel a huge weight off their shoulders once Walitt enlightens them with his superior knowledge. His “logic” seems to imply that physicians fall victim to political-correctness pressure that prevents them from saying or even thinking what they really believe, which is, of course, congruent with Walitt’s beliefs that fibromyalgia is—while real—not a disease, just a normal life experience.

Rather than pushing for better research to understand, and develop treatment for, the biomedical causes of fibromyalgia, and certainly preferable to feelings of failure that might be uncomfortable to doctors (never mind the patients’ agony), Walitt suggests the following:

Walitt_A_rational_approach_to_tx

Since Walitt believes that not treating fibromyalgia doesn’t harm patients, it only follows that he views biomedical research as unnecessary.

But just how did traditional” diseases become traditional, i.e., understood? By conducting biomedical research. That’s how! And yet, for Walitt, no further research into fibromyalgia is necessary, because his radical theory allows him to sidestep science.

Having declared now that fibromyalgia is normal, though atypical, and having decided not to pursue the development of curative treatment, Walitt suggests patients be told to fend for themselves, as they’ve been doing in the case of CFS for decades. Very tidy:

When you talk to patients with fibromyalgia, uh, and you ask them what they think about it, they can often provide you the answers, about where they should go. Uh. People with highly spiritual feelings and belief that, um, in spiritual forces as, uh, potential ways to heal, uh, should be referred that way. Uh, people who believe in exercise should go that way; people who believe in Eastern philosophies should be referred that way.

Walitt’s round-about way of stressing that fibromyalgia is real betrays what he really thinks:

The experience of fibromyalgia is very much real to the people who have it. 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 a [sic] underlying biology to it, but the idea that that’s an abnormal biology, um, is less clear. The idea that the way that we think and feel should be affected by the goings and comings of our lives and the difficulties we have, um, is something that seems, uh, self-evident, but also’s something that we, uh, like to pretend isn’t true. We’d love it if we could reduce all of these things to a simple pathway. You know science, um, has had all 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.

The problem with things like fibromyalgia and other, uh, disorders that are of the the neurologic systems of the brain, is that the brain seems to have a dual 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. (Smiles) How they play together, how they sing together, how they work together. And so our attempts to alter the biology without understanding the emotional overlay, um, probably leads to a lot of failure. Alright, there are, it it speaks to our lack of understanding how it really works. [emphasis added]

So in two paragraphs, Walitt has gone from being convinced that he knows that fibromyalgia is somatoform, to admitting that he doesn’t really know how it works because, you know, lack of understanding. But rather than being committed to finding answers, creating understanding, expanding the parameters of medicine to address the very real and urgent medical needs of millions of people, he settles—at the expense of patients—for providing only short-term palliative care to his complaining middle-aged female patients.

When he says that fibromyalgia is real to patients, he, of course, means it’s not real to him.

Instead of saying, “we haven’t found the ‘insulin’ for fibromyalgia and need to keep looking,” he bascially says, “It’s really just one of the body’s ways of experiencing suffering.” Bummer, I know.

And the good old standby mind-body connection is always helpful when trying to rationalize the psychologizing of a physiological disease:

… people are not willing to accept the idea that our emotions affect our sensation, right?

And again:

The problem with things like fibromyalgia and other, uh, disorders that are of the the neurologic systems of the brain, is that the brain seems to have a dual 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. (Smiles) How they play together, how they sing together, how they work together. And so our attempts to alter the biology without understanding the emotional overlay, um, probably leads to a lot of failure.” [emphasis added]

The dangers of the mind-body dualism are, of course, always particularly worrisome to Walitt & Co. when it comes to what the likes of him enjoy calling controversial conditions. Actually, according to Walitt, it’s not even a condition; it’s just normal. If only we would finally accept that our mind, and nothing else, is making us sick—scratch that: making us think we are sick—it would be better for *everybody.*

Fibromyalgia might be giving Walitt’s ego trouble because he, as a physician, is unable to help patients due to the limited amount of time a doctor has with his patients and the fact that medications do not work well in fibromyalgia. Hm, what other disease faces these obstacles? I can’t put my finger on it. But luckily, Walitt himself is helping me out. Since at least 2009, Walitt is on record conflating Fibromyalgia and Chronic Fatigue Syndrome as “disorders of subjective perception.” Sure, Walitt is likely to say that our experience is atypical, but what good is that going to do us? ME/CFS patients should be very alarmed by NIH’s choosing of Walitt.

By selecting a lead clinical investigator who has already declared CFS a somatoform disorder, NIH has tipped its hand in a major way, as if the stakes weren’t high enough for the community yet. Given the reputation and reach of the NIH, the weight this study is likely to carry will make PACE appear like a fifth grader’s (attempt at a) science project. In terms of its impact, this is PACE on steroids. Think about that, despite PACE being heavily attacked by journalists and scientists of impeccable reputation in the last few months, it has so far been impossible to get it retracted. Consider the enormous damage PACE has done to the health of so many patients and to the perception of what this disease is. And PACE is a study that, on its face, is devoid of science. How much harder do you think will it be to debunk an NIH study that appears to be looking for biomarkers, but finds that our debilitating symptoms are merely a normal reaction to life? It will be impossible. The stakes are enormous. This study has the potential to sink us for good.

How much more will NIH try to sneak by us? How many times are we supposed to give the agency the benefit of the doubt with this study? They attempted to force the Reeves criteria on us and when patients were petitioning against that, they dropped Reeves for the CDC Grand Rounds presentation without so much as the hint of an explanation as to why Reeves would have even been in the ballpark. They acted like Reeves was never in the picture and yet, I am not at all convinced his criteria are out of the picture. They are forcing the functional-movement-disorder and post-Lyme comparison groups down our throats despite a tremendous outcry about the use of a condition labeled psychogenic (What if FMD patients’ symptoms are caused by an infectious agent or have some other biological basis similar to what they might find in CFS?) as well as a stigmatized illness (Why use Lyme when we really don’t know much about it and the little we do know is disputed?). One of the other study investigators, Dr. Fred Gill, has the most repulsive track record when it comes to CFS. Charlotte von Salis’ piece about him is a must-read. Gill adores the late Straus of NIH, the Wessely School’s PACE and the CDC’s Reeves criteria. NIH might claim that Walitt was an accident, an inadvertent oversight. But two (and who knows how many more) investigators with a glaring bias against our community? That is clearly no coincidence.

And these are just issues patients have been able to glean, partly from the outlandish roll-out of the study (which NIH never apologized for) and NIH’s entirely inappropriate back-channel feeding of information to chosen advocates. There is, without a doubt, a lot going on behind the scenes that we won’t find out about until it’s too late. Replacing the Reeves criteria clearly wouldn’t rectify all that’s wrong with the study. Turns out Reeves may be the least of our worries. Let that sink in.

People are dying—either prematurely because of ME or at their own hand when the suffering becomes unbearable. If they are not dying, they live in agony. There is no room for even the slightest remnants of feel-good drivel or this-is-normal claptrap, let alone for putting somebody with that belief system in the role of the lead clinical investigator. With the reveal of Walitt’s role in the study, we’ve been treated to some inadvertently-shared insights into the structure and aims of the NIH study. Maybe we’ll be able to make enough noise to get Walitt kicked off the study. But don’t hold your breath and, in any event, it doesn’t change the fact that NIH has made its intentions very clear: the rebranding of ME/CFS as a normal life experience.

I’ve included the full transcript below.

Thanks to Ella for assistance in finding a way to translate this mess.

***

(This is not the topic of this post, but note that based on the first slide of Dr. Nath at the CDC Grand Rounds a few days ago, the original post-infectious *CFS* study was turned into a post-infectious *ME/CFS* study. In this post, I am using the terms “ME/CFS” because NIH is using it and “CFS” because Walitt is using it. Unfortunately, it’s beyond the scope of this post to address the issue conflating ME with CFS to which I strongly object.)

NIH_Study_Title_Original

NIH_Study_Title

***

Transcript of interview of Brian Wallit

during the conference “Perspectives in Rheumatic Diseases 2015”

held on September 18-19, 2015 in Las Vegas

(The video of the interview was posted on September 30, 2015 at http://www.familypracticenews.com/specialty-focus/rheumatology/single-article-page/video-fibromyalgia-doesnt-fit-the-disease-model/e913134880916685f3005dac5459ab88.html)

Interviewer: What should we do to try to help patients with fibromyalgia?

Walitt: The most important thing to do is to listen, right? To understand that the experience is valid and not to belittle them, right? It’s also important to be honest with them and explain that the medical system can’t provide the answers that they want. That at best, we can try to help them. We can give them some tools to help deal with the day-to-day struggles of having fibromyalgia. But we can’t just make it go away. We can’t restore them to what they think they should be. [not audible] We should bear witness to their difficulties, which is the oldest of the jobs that physicians do.

(Smiles) One of the interesting things about this talk is that people come in with a set of beliefs and a lot those come from what they’ve been taught and what they see on television and what their patients come to their offices with. Sort of these ideas of, you know, fibromyalgia is a disorder of sensitive nerves.

Slide 1: Patient FM

But it’s a narrative that doesn’t seem to be valid and the hope is, and physicians, as they see me talk, often start off using that narrative and believing in the narrative and answering the questions in terms of the narrative, but deep down they know that it’s not true. And by the end, after I say my message, um, they are relieved to hear that deep down their believes are not wrong and that really what may be required is not, uh, saying that fibromyalgia is not real, but finding a new narrative in which to discuss it, one that makes much more sense, uh, to everybody.

Interviewer: Do we have any idea yet what narrative might be more useful?

Walitt: (Smiles, sights) Ahhhh, that’s a tough question. Um, the problem is that language is so heavily charged. Uh, people are not willing to accept the idea that our emotions affect our sensation, right?

Slide 2: What is Fibromyalgia?

The idea that mind itself is able to create these things and that all experiences are psychosomatic experience. Nothing exists without your brain creating those sensations for you. And the idea that, uh, 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, ahem, 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 leave [sic], not the ones that our bodies are restricting us to. Uh, and so accepting those kinds of ideas, ahem, is not so easy, but that might make it a little bit easier on everybody. It might be a more palatable narrative, uh: understanding that people can feel bad for no real fault of their own, uh, because of their circumstances of lives and how brains just work—the way it’s supposed to be, as opposed to being sick. There is a wonderful line from this gentleman, Joel Higgs [sic]: “When people are atypical, society do one of three things: They either medicalize, criminalize or moralize [Smiles]. And so, when we find people with things like fibromyalgia, they are either gonna 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 are not sick, bad or weak, that you are just dealing with the difficulties of just being a human.

Interviewer: Brian, why did you title your talk on fibromayalgia as “Tilting at Windmills?”

Slide 3: Tilting at Windmills (a rational approach to fibromyalgia)

Walitt: Oh, I wanted to invoke Don Quixote’s quest to slay a dragon. Um, 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, um, is kind of a fallacy. And I thought that title would uh bring that out. (Smiles)

Interviewer: What are the difficulties in dealing with fibromyalgia?

Walitt: Well, as physicians, we have a limited amount of time in the office and our training is to use medications, um, 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, [uh, you’ll inevitably fail.

The experience of fibromyalgia is very much real to the people who have it. 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 a [sic] underlying biology to it, but the idea that that’s an abnormal biology, um, is less clear. The idea that the way that we think and feel should be affected by the goings and comings of our lives and the difficulties we have, um, is something that seems, uh, self-evident, but also’s something that we, uh, like to pretend isn’t true. We’d love it if we could reduce all of these things to a simple pathway. You know science, um, has had all 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.

Slide 4: “Fibromyalgia Controversy”

The problem with things like fibromyalgia and other, uh, disorders that are of the the neurologic systems of the brain, is that the brain seems to have a dual 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. (Smiles) How they play together, how they sing together, how they work together. And so our attempts to alter the biology without understanding the emotional overlay, um, probably leads to a lot of failure. Alright, there are, it it speaks to our lack of understanding how it really works.

Interviewer: What is fibromyalgia?

Walitt: That’s a hard one. Ah, time will tell. Uh, fibromyalgia appears to be a way that people experience suffering in their body. Um, both from the way that the bodies are interpreted and the problems of the body, as well as the problems in their lives, as well as how societies tell us how to experience things. All those come together to create a unique experience in different points in time, and right now, that experience, um, is a, one of those experiences is fibromyalgia. Ah. Is it a disease? Or is it a, uh, a normal way that we handle and are supposed to work is still to be determined. But it’s quite possible that the (frowns) tricky way that the brain works, is that we may create symptoms as part of how we’re supposed to operate, as opposed to this representing the system breaking down.

(fade in and out)

When you talk to patients with fibromyalgia, uh, and you ask them what they think about it, they can often provide you the answers, about where they should go. Uh. People with highly spiritual feelings and belief that, um, in spiritual forces as, uh, potential ways to heal, uh, should be referred that way. Uh, people who believe in exercise should go that way; people who believe in Eastern philosophies should be referred that way. Uh, taking a one size fits all, or using your own judgment of what is legitimate, uh, is often not helpful in treating people with fibromyalgia, because it’s really about what they think is legitimate.

Slide 5: A rational approach to treatment

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69 Responses to Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience?

  1. Dave Olson says:

    when, and who is going to start a petition to rid Wallit of this job? what is wrong with NIH?

  2. Penny Richardson says:

    Love how our Tax Dollars are spent. Just walk a mile in our shoes, Dr.Wallit.

  3. Russell Logan says:

    Wow! A lot of work [and anger] went into this blog. Thank you Jeannette for eloquently expressing the frustration and alarm patients feel with this NIH project.

  4. Ess says:

    Ding-Dong. Next there will be a seance for contacting the supernatural. To be sure — this is strategic with the NIH in the continued decades long MALtreatment of persons with M.E. NIH and co., with this–Dr. Walitt–are aiding and abetting the Psychobabblers across the pond–as we know there is a huge issue with PACE trial. TPTB on both sides of the pond work together.
    What’s the next strategy @ NIH ? Replace Dr. Walitt with the lesser of two EVILS … ?
    Loony tunes.
    This is NOT science — this is BULLsh*t.

  5. Gabby says:

    Thank you, Jeannette for this in-depth analysis. This should be a wake up call to the entire community. Unless, you agree with Walitt’s belief that this disease is just another normal and that medical science will never have an answer for you because it is up to you and your mindset to make a change or adjust your life to cope with this- you should stand up and shout NO. No to Walitt but also no to so much more that is wrong with this study. We better act now, before it’s too late.

  6. Sharon says:

    Great analysis, Jeannette.
    Here are references that I hope will help.

    Walitt was a co-author of this paper: “Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy,” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/
    Cytokine. 2015 Mar; 72(1): 86–96.
    Published online 2015 Jan 5. doi: 10.1016/j.cyto.2014.12.006
    Authors: Xiao-Min Wang,a,b,* Brian Walitt,c Leorey Saligan,c Agnes FY Tiwari,a Chi Wai Cheung,b and Zhang-Jin Zhangd

    Excerpt:
    “The state of the evidence for chemobrain strongly resembles that which is seen in fibromyalgia and chronic fatigue syndrome. Like chemobrain, patients with these illnesses experience subjective and clinically distressing dyscognition, with attention, concentration, forgetfulness, word-finding, multi-tasking, and organization being the most common complaints. Also like chemobrain, measurements of objective neuropsychologic function frequently fail to demonstrate impairment and what is seen in positive studies is of small clinical magnitude [40–42]. The increased recognition of cognitive symptoms in these disorders has led to their inclusion in diagnostic criteria [43,44]. These illnesses also draw support from neuroimaging studies that commonly show alterations in the structure and function of frontal cortical regions that are passingly similar to those documented in chemobrain [45]. Limited evidence of alterations in oxidative stress, neural repair, immunologic, and endocrine changes have also been reported [46]. Both of these illnesses have disputed causal triggers, such as trauma in fibromyalgia and infection in chronic fatigue syndrome, whose validity is also not answered by the scientific literature to date. The clinical and scientific experience of chemobrain is remarkably similar to the dyscognition reported in fibromyalgia and chronic fatigue syndrome. However, no comparative studies between these dyscognitive states have been performed to date. The implications of this observation are that specific chemotherapeutic-related neurologic injury is not required to create the somatic experience of chemobrain.

    The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome.”

    • Thank you for this important link, Sharon, and the quote.

    • Anonymous says:

      Thank you, Jeannette. Dr. Walitt’s views really are appalling. We are pushing back at NIH. Carol Head

      • Really, Anonymous/Carol Head? In what way are you and CAA/SMCI “pushing back” at NIH? What are you doing to get this bogus study canceled? All I have seen is your comments praising NIH for this study of “CFS” and now “ME/CFS” which will likely put real ME patients back in the mental health area along with those with “chronic fatigue.”

        Patricia Carter

        • jimells says:

          I found it useful to read the recent public statements from Solve, and those statements make it clear that Solve was blind-sided by their NIH “partners”:

          Our organization—represented by our Vice President for Research and Scientific Programs—was immediately in contact with the NIH officials we have an existing, ongoing relationship with to express these serious concerns. We will push forward to determine what may be done to address them and ensure that this study is leveraged to the full benefit of ME/CFS patients. The Solve ME/CFS Initiative also will work in concert with other advocates to ensure maximum impact as a community. (1)
          ———–
          Solve ME/CFS Initiative President Carol Head will continue to raise the concerns over Dr. Walitt when she meets with NIH officials in D.C. on March 8 along with fellow advocate Mary Dimmock. (2)
          ————

          These are hardly statements of praise for recent NIH actions.

          1. http://solvecfs.org/NIH+Begins+Recruitment+of+ME/CFS+Study+Participants

          2. http://solvecfs.org/NIH-Study

  7. Sharon says:

    Comment #2:
    According to his profile page on the NIH website (https://nccih.nih.gov/…/laboratory…/staff/walittb
    ),
    “As Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigations, Dr. Walitt will provide his medical and scientific expertise to the development and oversight of intramural clinical protocols. He will help identify patient populations for pain studies, as well as educate NCCIH trainees about various chronic pain syndromes. Dr. Walitt has a dual role as a medical officer at the National Institute of Nursing Research.”

    “Research Interests:
    • Pain and related interoceptive disorders (i.e. fibromyalgia, chronic fatigue)
    • Social construction of illness and disease
    • Inflammatory arthritis and autoimmune disorders”

    Dr. Walitt’s areas of expertise, research interests and history of characterizing ME/CFS as a somatic illness should disqualify him from any leadership role, or any role at all, for that matter, on a *scientific* study of ME/CFS. The IOM’s report highlighted exertion intolerance as a key symptom; contrast this with Walitt’s well-documented point of view and history. There is no match here whatsoever.

    I cannot find any good intentions associated with Walitt’s appointment. If NIH is willing to provide us with a plausible explanation I would be very interested. And so will my congressman.

  8. Ess says:

    Jeannette — also wanted to thank you for your in-depth work on yet ‘another one.’ Thank you !!!

  9. duncan says:

    Nods. You’ve captured it perfectly.

  10. Sharon says:

    Here is a link to Walitt’s page on the “national data bank for rheumatic diseases” website:
    https://www.arthritis-research.org/research/brian-walitt-md-mph
    and this link: Northern VA (NOVA) CFS/ME, FMS, OI & Gratitude Support Groups
    http://cfsnova.com/sp-Walitt.html#events

  11. Jan says:

    Excellent as ever…..

  12. Sharon says:

    One more observation – this one about the last paragraph of Brian Walitt’s final response:
    “When you talk to patients with fibromyalgia, uh, and you ask them what they think about it, they can often provide you the answers, about where they should go. Uh, people with highly spiritual feelings and belief that, um, in spiritual forces as, uh, potential ways to heal, uh, should be referred *that* way. Uh, people who believe in exercise should go that way; people who believe in Eastern philosophies should be referred *that* way. Uh, taking a one-size-fits-all, or using your own judgment of what is legitimate, uh, is often not helpful in treating people with fibromyalgia, because it’s really about what *they* think is legitimate.

    Can anyone else think of any other disease (other than FM and ME) in which an excellent, experienced and responsible medical doctor would describe his or her approach to treating a patient – a human being – in the same manner described by Dr. Walitt? His statements in the interview are outrageous, disgusting, cruel, and barbaric. They are an affront to reason. It appears he believes his approach has a legitimate place in medical practice but in my opinion, he ought to be prosecuted for malpractice.

    The aforementioned September 2015 video interview with Walitt is publicly available, as are his many papers and slide decks. His philosophy and conclusions are no secret and have been clear and consistent over many years. It is an outrage that NIH appointed Walitt as lead clinical investigator for its intramural study “Post-Infectious Myalgic Encephalomyopathy/Chronic Fatigue Syndrome” given his track record. NIH must remove Walitt from this position immediately and appoint a competent scientist in his place.

  13. Carrie says:

    Thank you, Jeannette. This is just…..unbelievable.

    How many times do we let NIH kick us down? Does anyone still think we’re getting a fair deal?

    We are sick, yet it is our job to catch these NIH “mistakes” before they harm us.

    The people who are getting paid to help us are sinking us, and this has been going on for decades. It’s criminal.

    Francis Collins, you say you’re serious? Don’t give us this kind of crap!

    The only acceptable “narrative” is research, increased funding and wise spending of our tax dollars.

  14. John L Whiting says:

    Dear Jeannette,

    Thank God you uncovered this idiotic state of mind and all that it stands for. Unfortunately, Walitt is not alone in this mode of thinking, so it is great that he has inadvertently articulated everything that needs to judged by more sound minds about this subset of disillusioned individuals.

    I have come across many pain ‘specialist’ like him, who truly believe what they are saying is correct. How this man came to be Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigation might be due to systemic psychopathology within his ‘specialty’.

    One of the big issues exposed here is how to think about the term ‘normal’. For example, it is NORMAL to bleed to death after being stabbed in the heart? In Walitt’s mind, so be it, but to most people, we ask is it normal to be stabbed in the heart at all, and if so, when, how, and so on. Walitt’s mind is very mixed up and is totally unacceptable for a man of power in the NIH.

    His calm demeanour is a very useful tool for deception and propaganda. For those who believe him, he must sound like music to their ears. Goebels would be proud to have him on his team. It is so easy to be swayed if one has little prior knowledge or true understanding of the situation. On the other hand, his errors of reasoning are blatantly obvious to those of us more intelligent people (smile).

    Only talking about this here is, however, insufficient:

    Walitt has instantly discredited and disqualified himself and we ought to make much of this. He personally will probably pay no attention to this blog, but others need to be fully aware of the dangers of allowing him to continue to hold his current position. He, of course, is surrounded by like minded individuals who see him as a Godsend. This MUST change.

    I am only writing my initial thoughts on this video clip. There is so much more that needs to be said, as Walitt has said so much that is worthy of exposing to those with more reason, logic, common sense and morality.

    He is saying “Let them have cake”, as long as it doesn’t bother the rest of the world. Walitt would prefer fibromyalgia to disappear as some kind of interesting urban myth. Validation is an important first step in traditional therapy. It is necessary but not sufficient in terms of illness models and their management.

    We are grateful to you Jeannette for uncovering this clip and what misinformation is being put to the world at large. We know what needs to be done and the challenges that lie ahead. One day, Walitt and people like him will be urban myths of interest, but nothing more.

    For the time being, Walitt ‘s name has simply contaminated my computer.

    Sincerely,

    Dr John L Whiting

  15. justinreilly says:

    Here’s an article he wrote on “central sensitivity syndrome.”

    Notice how he characterizes “cfs,” fibro, etc. as “postulated syndromes” without “clinically obvious pathology”! He doesn’t even consider “cfs” to be a syndrome (!) much less a disease.

    Neuroimaging of Central Sensitivity Syndromes: Key Insights from the Scientific Literature.
    (PMID:26717948)

    Central sensitivity syndromes are characterized by distressing symptoms, such as pain and fatigue, in the absence of clinically obvious pathology. The scientific underpinnings of these disorders are not currently known. Modern neuroimaging techniques promise new insights into mechanisms mediating these postulated syndromes. We review the results of neuroimaging applied to five central sensitivity syndromes: fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, temporomandibular joint disorder, and vulvodynia syndrome… Evoked sensory paradigms reveal sensory augmentation to both painful and non-painful stimulation. This is a transformative observation for these syndromes, which were historically considered to be completely of hysterical or feigned in origin.

    http://europepmc.org/abstract/med/26717948

    • justinreilly says:

      and that article is from 2015!

      • John L Whiting says:

        He goes further in this paper to say:

        “A coherent picture of a “central sensitization” mechanism that bridges across all of these syndromes does not emerge from the existing scientific evidence.”

        This statement is true, but …

        … WE DON’T YET UNDERSTAND EVERYTHING THERE IS TO KNOW !!!

        So, to restate:

        A coherent picture of a “central sensitization” mechanism that bridges across all of these syndromes does not YET emerge from the existing scientific evidence.

        The revised wording would, to me, be a more truthful and more acceptable statement. We are not finished in our research, but Walitt, unlike genuine scientists, wishes to close the book on the matter.

        The tone of the original statement, whilst factual, is incorrect. A single word, as history itself has born out, can make all the difference. For example, capturing the precise meaning of a communication between Nikita Khrushchev and President Kennedy was essential in preventing an escalation of the Cuban Missile Crisis. It is not simple a matter of words, but meaning as well. Editors and scientists must remain acutely aware of this.

  16. justinreilly says:

    Thank you, Jeannette for this excellent piece on this complete outrage. His bald statement that “patients will not be harmed by lack of treatment” is breathtaking and gives me a big sinking feeling that that we are in store for big announcements like this about “cfs” from NIH when this “study” is done. This charlatan must be stopped!

  17. acer2000 says:

    What a joke. After all of this, you’d think they could pick someone, anyone, who takes this seriously? How do we communicate this problem to the NIH?

  18. Utting Wolff says:

    Reblogged this on Utting-Wolff Spouts and commented:
    Another powerful doctor whose misogynistic, condescending psycho-babble carries far too much weight. If one of my undergraduate students had offered such unsabstantiated waffle I would have politely but firmly asked them to apply themselves more to their subject matter and return to my seminar room when they are (not feel or believe to be) better equipped to participate in research-based debate. The type of interview I have just listened to is detrimental to people’s lives and adds further to the general hatred and abuse severely ill patients are subjected to. The abuse is not merely personal and a bit hurtful, it cuts to the very core of people’s existences, e.g. when doctors refuse to write sick notes, when insurance companies refuse to pay, when housing benefits are withheld on the basis of someone not suffering a ‘real’ illness. So, yes, this sounds like hate speech to me, as it is a thinly veiled invitation to further neglect and ridicule of human beings who are desperately ill. As I type this introduction to a brilliant blog post by Jeannette Burmeister, I cannot swallow or speak due to a severe secondary bacterial infection. I do not believe I am in a delicate nervous state or that my feverish, frail (yet impressively strong?) mind dictates I experience a raging throat for the fifth week and counting. It is objectively there, there is absolutely nothing I can tell myself that will let me transcend my horrendous infection and float away into the sunset. Neither did I dream up intestinal bleeding or any other of the unsavoury and painful symptoms that are directly linked to ME and that I do not imagine I experience (or some such convoluted hocus-pocus). Please do not just stand there and tell people to ‘witness’ it, as Jeannette has also pointed out in her post. I do not cling to my hospital experiences of the past, they were horrendous yet life saving, in short, medically necessary interventions for my survival that seems to offend certain doctors so much. I am, like hundreds of thousands of others, ill. Why are some doctors deeply insulted by this pretty straightforward fact? I expect science to deliver valid findings, not patriarchal gibberish. Or is it my frail little woman mind that believes itself to be angry and hurt now, entirely without a reason? Judge for yourselves.

  19. Russell Logan says:

    Just a small point. You mention the ME/CFS conflation… CCC defines ME/CFS, so if they are using CCC, they would have to call it so. CCC is not the best way through this political swamp, imo. I would prefer they use ICC-ME, but then they probably would not have enough patients to fulfill the Fukuda criteria, lol.

  20. nyul72 says:

    Thanks Jeannette for this fantastic post. I’ve added a link to it to MEpedia on the Walitt page where patients have been collating information about him.
    http://me-pedia.org/wiki/Brian_Walitt

    • Marilynne Rowland says:

      Un-frecking believeable!! And he is also disputing the existence of Lyme Disease!! Tell my daughter’s lab results that doesn’t exist!!!

  21. Excellent analysis as always. Frightening Kafkaesque monstrosity of medical gerrymandering .. when is this EVER going to end? Has a petition been created for this?

  22. oniricale says:

    I don’t even know where to begin. There are some seriously disturbed ‘professionals’ out there.

  23. Lisa Petrison says:

    Thanks for your excellent summary, Jeannette. This is a really dangerous development that needs to be forcibly addressed.

  24. Laurel says:

    Oh my God!!!!!!!! I can’t believe this #$%&(^%$$#. I’m as new-agey as they come, and I think this guy has gone way off the deep end of the “you create your own reality” school of new-age claptrap. Yes, let’s blame the victims yet again.
    Thanks for doing such a great job with this article, Jeannette. You are such a treasure in our community.

  25. Rhonda ovist says:

    Thank Jeannette for once again keeping us informed of what’s going in under our very noses. Aside from feeling like throwing up and crying, I am freaking furious. I’ve had enough. My personal life has been quickly falling into chaos because I dared get seriously ill with this disease, and I’m fighting on multiple fronts, big corporations and government agencies* trying to salvage some part of my life. I don’t think I’ll succeed, but I’ll down fighting.
    I’d rather join my personal fight with a larger activist group of ME and CFS patients to fight at the national level. For too long, as individuals we have felt helpless and have hoped for someone else to do the right thing, and make changes that would lead to better research, care and support of us. Obviously, it’s either not happening or it’s not enough. Part of the problem is that we are literally invisible, since so many of us are either homebound (&/or bed bound) or so exhausted from our work days that we have no life outside our jobs.
    I’ve long desired to work to make us more visible in such a way that people would have to acknowledge their lack of compassion and humanity by turning their backs on us. I even started a book project, and went so far as to gain institutional review and a call for stories. But then my book partner moved on and my own life went insane when I had to go on disability (which has been five years of much higher stress and exertion than I experienced working as tenured college professor of sociology).
    I keep talking to friends about starting a patient activist group where we work together to increase our visibility and demand our fair share of unbiased research dollars,must to start. Only by forcing people to acknowledge not just our existense, and not just the suffering we experience from the disease itself, but also the systemic prejudice against us, in part driven by misogyny (which has a long and worried history in the medical professions) that makes being sick a punishment worse than that experienced by violent criminals (we lose our insurance, income, homes, and we are left in isolation and without care).
    One of the most central steps in making our situation and our diseases a “social problem” that’s worthy of public attention is convincing the population that our issues are relevant to them. This is not only common sense but is also a typical strategy of any effort to gain attention (for instance, television commercials encouraging you to watch the news in an hour so you can find out the newest danger to you and your family). I can think of numerous tie-ins, from the corporate business profit motive behind most aspects of medical care today, to the increasing rates of immune related illness as well as neuro- problems that do not easy fit in to the Western bio-medical model of medicine (which treats illnesses as arising from single organ systems as opposed to the multi-system consequences of ME, CFS, FIBRO, auto immune diseases, and other less known conditions.
    I’ve theorized for a coupme of years that those of us with predispositions for these kinds of illnesses – either due to biological or situational traumas – are simply the canaries in the mine; the three of the medical doctors I have talked to so far agree that we should consider the growing rates of Neuro and immune illnesses (which exceed the growth expected from better diagnosing and reporting) and their possible links to trauma, toxins, and stress (lots of research here negative Neuro and immune consequences of high stress ). Yes, they are my doctors, and they are all OD, instead of just MD, and thus more inclined to consider more holistic approaches to medicine(an OD is a licensed medical doctor but has had training in more holistic medicine). How often do we even think about the possible negative impact of the enormous (and still increasing) level of stimulus that confronts our neuro and immune systems daily – is there a point when the biological protections in our bodies simply become over taxed?
    At any rate, let me leave you with this: if there is not a existing patient activist group that we can join, I’m very interested in starting one, if I can get some reliable dedicated patient/doctor partners. I have some experience and knowledge about social movements and activism, I’m not afraid of trying , and I like to see far more of us empowered by the belief that we can fight back even if we have no other means of activism than using our own computers and smart phones. In fact, the Internet and modern technology means we can still become a force to be reckoned with even though most of us can’t get out of town, or even our homes. Ideally,nwe would join forces with all existing advocacy and support groups, but we would take more patient driven route – and if we pool our ideas I think we could create a great organization, platform, strategies and plan of action. In a perfect world, our efforts would join those of advocates working at the national government level as well as those at the more localized level.
    I’ve already generated some interest in this project from a major ME/CFS and FIBRO support site.manybof U.S. Want to do something but don’t know how or what. Our objective would include harnessing this desire and help patients turn it into a proactive task of speaking up and making ourselves heard, not as a ” bunch of whiney. Middle aged women (wtf was that about, couldn’t be a little sexism?) but as strong survivors who won’t put up with the disrespect, the stigma, the absolute cruel behavior of those that should know better that has become a regular part of our lives, any more. We are just as valid and important as anybody else, and we won’t let anyone try to tell us otherwise

  26. I cant add anything to your blog Jeannette, you covered all of the bases!
    Thankyou so much another home run out of the ball park! 🙂

  27. What a load of cow poo… maybe every ME patient should just go and do as PACE directs…. show doctors just how badly off we are after exercise and maybe, just maybe then they’ll actually listen..Or will they say “our minds made us suffer…” looks like we’re stuck in a load of cow poo alright. Thanks Janette for this, great read, for the wrong reasons!

  28. Deborah Waroff says:

    A patient group for diagnostic rights exists. I don’t know how big. This guy does no work. One of his CFS write ups in 2015 had Holmes (1988) as the sole CFS footnote. Lazy lazy lazy. I say attack from the right — he’s like the $7,000 air force toilet (detail a little vague) Waste of taxpayer money.

  29. G says:

    I’m getting a strong “put the lotion in the basket” vibe from that video…

  30. Anon says:

    Polysmptomatic distress, psychocultural illness, bodily distress syndrome, somitization; psychogenic rheumatism: “‘We Think they’re all crazy.'”

    “Fibromyalgia and 19th Century neurasthenia are often indistinguishable… Fibromyalgia…represents the end point of a continuum of polysymptomatic distress…

    Fibromyalgia is closely allied and often indistinguishable from neurasthenia, a disorder of the late 19th and early 20th century that lost favor when it was perceived as being a psychological illness. Fibromyalgia is also associated with psychological illness and socio-demographic disadvantage. However, its status as a “real disease,” rather than a psychocultural illness is buttressed by social forces that include support from official criteria, patient and professional organizations, Pharma [appealing to a “well-dressed middle class”], disability access, and the legal and academic community.”

    “‘…once neurasthenia was viewed as psychiatric, a principal social function was lost.’ …Time
    brings clarity to confusing illnesses of the past, and we now recognize that hysteria, neurasthenia,
    and Railway spine were almost always psychogenic disorders.”

    Walitt quotes Wessely, Fink [of Karina Hansen “fame”] and Shorter! (Written with Frederick Wolfe.)

    https://web.archive.org/web/20160223031446/https://www.arthritis-research.org/files/Wolfe%20(2012)%20Culture,%20science%20and%20the%20changing%20nature%20of%20fibromyalgia%20-%20NRR%20submission%20version.pdf

  31. Reblogged this on Our Invisible World and commented:
    Please read Jeannette Ketterle Burmeister’s blog post on why Brian Walitt, lead investigator of NIH’s new M.E. (“CFS”) study, should be removed.

  32. Thank you for this excellent blog post, Jeannette. I know you spent an enormous amount of your precious energy on this, and I am grateful to you. I hope you will recover quickly from whatever “payback” you get for your work on this post.

  33. Reblogged this on The Other Side Of The Stretcher and commented:
    Jeannette’s blog talks about NIH’s latest psychologizer who was appointed Lead Clinical Investigator of the PI-CFS study.

    “Psychologizers do not confine themselves to any one school of psychology. They snatch parts of any and all psychological theories they see fit.” – The Voice of Reason: Essays in Objectivist Thought by Ayn Rand.

  34. meagenda says:

    Last June, I informed a number of international fibromyalgia organizations about a proposal paper by the International Association for the Study of Pain (IASP) Task Force and proposed changes for the classification of Fibromyalgia for ICD-11.

    Stakeholder patient organizations, the clinicians who advise them, allied health professionals and disability lawyers should scrutinize the IASP Task Force’s paper [1], the relevant Beta draft rationale and proposals documents and other descriptive content and register with the Beta draft to submit formal comments or make formal suggestions for improvements via the Proposal Mechanism (supported with references, where possible).

    For personal and political reasons, I retired from advocacy at the end of 2015, but last August I published two reports on my Dx Revision Watch site on these proposals:

    Proposals for the classification of Chronic pain in ICD-11:

    Part 2: Fibromyalgia

    http://wp.me/pKrrB-48Y

    On May 5, 2015, the ICD-11 Beta draft category, Fibromyalgia, was deleted from the “Diseases of the musculoskeletal system and connective tissue” chapter and relocated under “Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified”.

    For ICD-11, Fibromyalgia is proposed to be listed under the Symptoms, signs chapter, under a proposed new primary parent category called, “Multi-site primary chronic pains syndromes”, under a new parent class, “Chronic primary pain”.

    The Treede et al (2015) proposals paper [1] describes “Chronic primary pain” thus:

    “2.1. Chronic primary pain

    “Chronic primary pain is pain in 1 or more anatomic regions that persists or recurs for longer than 3 months and is associated with significant emotional distress or significant functional disability (interference with activities of daily life and participation in social roles) and that cannot be better explained by another chronic pain condition.

    “This is a new phenomenological definition, created because the etiology is unknown for many forms of chronic pain. Common conditions such as, eg, back pain that is neither identified as musculoskeletal or neuropathic pain, chronic widespread pain, fibromyalgia, and irritable bowel syndrome will be found in this section and biological findings contributing to the pain problem may or may not be present. The term “primary pain” was chosen in close liaison with the ICD-11 revision committee, who felt this was the most widely acceptable term, in particular, from a nonspecialist perspective.”

    For Part 1 of this report on the proposed expansion of “Chronic pain” categories for ICD-11, see:

    Proposals for the classification of Chronic pain in ICD-11: Part 1

    http://wp.me/pKrrB-488

    1. A classification of chronic pain for ICD-11 Treede R, Rief W, et al, June 2015
    http://journals.lww.com/pain/Fulltext/2015/06000/A_classification_of_chronic_pain_for_ICD_11.6.aspx

  35. Rivka says:

    WOW. what a lot of work you put into this excellent review. it makes clear the total lack of seriousness with which NIH offers the 1 million disabled american patients with ME. so much for their october 2015 promise of help. you are a gem for all your hard work. thank you thank you thank you.

    bedridden and too weak to function, like many of us,
    rivka

  36. Linda says:

    THIS IS WACKED!!!!!!!!!!😖😖😖😝😝😝👎👎👎👎👎

  37. Karena says:

    After watching the video, I think Walitt’s attempts to be sympathetic are almost comical. It’s as if he’s saying, “We all know there’s nothing really wrong with these patients, but we shouldn’t let them know how we feel. We must gently point them in the direction of finding a way to live with whatever they THINK is wrong with them. If we do our job correctly, they’ll get the message and stop wasting our time.”
    The guy probably does a lot of damage. Primary care doctors don’t like to feel helpless. Many are just waiting for some like this to come along and reinforce their suspicions about patients with confusing health problems. I don’t want my doctor to placate me. I’d rather have someone who is honest, even if he things I’m exaggerating symptoms. Then I can give him studies and evidence to the contrary.
    According to Walitt, all things are revealed in time. Maybe someday time or karma will reveal him to be duplicitous, double-talking, pseudo-expert he appears to be.

  38. Diewertje says:

    This would be hilarious if it wasn’t so pathetic

  39. Sharon says:

    and this… “My research interest is perceptual illness. In these disorders, a person experiences a range of different bodily sensations, such as pain and fatigue, without any clear external cause…”

    http://georgetownhowardctsa.org/researchers/researcher-stories/brian-t–walitt-
    Brian T. Walitt, MD
    August 07, 2012
    (Interviewer) “Describe your research interests and how you chose this area of research.”

    (Brian Walitt, MD) “My research interest is perceptual illness. In these disorders, a person experiences a range of different bodily sensations, such as pain and fatigue, without any clear external cause. In some, these sensations can be bothersome while in others they can be disabling. The perceptual illnesses that interest me change their names with every generation, with current disorders being called fibromyalgia, chronic fatigue syndrome, and post-Lyme syndrome.

    My involvement in the field started during my medical training as I saw my first patients with fibromyalgia. The complaints of these patients were very familiar and made me realize how common they are in the general population, even amongst my friends and family. The desire to figure out a way to alleviate this particular type of suffering drew me into the field. As I have become more involved in research over the years, I have become convinced that unraveling the mysteries of perceptual illnesses will also shed light into the mechanisms that enable all people to feel and think and expand our understanding of the human condition.”
    – See more at: http://georgetownhowardctsa.org/researchers/researcher-stories/brian-t–walitt-#sthash.13lYEA8g.dpuf

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  41. Allison. says:

    Thanks so much for all this, Jeannette. I appreciate everything you do for us, especially when you reveal ugly truths such as this. Crazy-unbelievable, yes. Horrifying, yes. But we all need to know about it so we can take action. This man has GOT TO GO ! Thank-you.
    From a “pesky middle-aged woman” with the “perceptual illness” called M.E. (although I was only a pesky 30-year-old when I suddenly became sick & disabled).

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  48. Laurie says:

    Please watch this 2 hour NIH video with Brian Walitt, “Demystifying Medicine 2013 – Pain: How It Happens and What Can Be Done?” The whole video is important. I’m sorry I’m not well enough to write about it; others will have to do that. Thank you. https://www.youtube.com/watch?v=1DTwkooHUF8

    Thank you Jeanette and Edward for all that you do on behalf of our community. I hope you’re feeling better Jeanette and that you’re able to get the treatments that you need.

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  50. Anonymous says:

    It is beyond comprehension that someone of such ignorance can be given credence by NIH

  51. When we are in a car accident that injures us, no one questions the injuries. Try being devasated by an infectious disease mechanism, and some one says it’s all in your head, when your body continues to fight, and hurt. Most of us remember a specific event, that lead to something we call CFS/ME, Fibromyalgia. I hate to say this, but may he have a significant experience that makes his body turn against him…because I see nothing but an ignorant buffoon, who needs a first hand experience. I hate to say it…but he disgusts me. What a fool.

  52. seesir says:

    This man’s remarks are ‘gobbeldyguk”. in other words…totally incomprehensible. What garbage!!

  53. jess says:

    WTF. apparently u all have never had him as a doc.. i did. at wash hospital. he never gave up on me when i thought i was crazy. NO i dont have fibro. i have SAPHO. im 1 in 20k ever dign. no research. no info no treatment ohh n i have chrones 2 which almost killed me in aug. u all need 2 get a clue cuz he became my doc in 2002.. even though i moved he still picks up my calls.. fyi i take NO MEDS.. he learned treatments just 4 me…

    • Thank you for your report of your experience with Dr. Walitt as your physician. However, that is really not relevant to the conversation here and for much more crucial reasons than the fact that you are not a fibromyalgia or ME patient. Though the latter suggests that you may not be familiar with epic controversy that surrounds Walitt; especially since you didn’t address it.

      Walitt’s bias when it comes to fibromyalgia and myalgic encephalomyelitis is well established. He co-authored a paper, https://www.ncbi.nlm.nih.gov/pubmed/25573802, in which he opined (It’s an opinion because it’s not backed by any credible research.) that fibromyalgia and ME are somatoform illnesses. Papers such as that one are at the root of harm for countless patients, including children. The reports of harm resulting from the myths propagated by the likes of Walitt are abundant and harrowing.

      The statements Walitt made in the video discussed in this post are so far off the charts that it’s not a question of if they are likely to cause more harm for fibromyalgia patients, but rather how much harm. They are indefensible. Imagine he had said those things about cancer or ALS or any other serious disease instead of fibromyalgia. Here are some examples:

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

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

      “Fibromyalgia appears to be a way that people experience suffering in their body.”

      “Is it a disease? Or is it a normal way that we handle and are supposed to work is still to be determined.”

      The bottom line is that anecdotes of experiences patients had with Dr. Walitt are beside the point. Walitt has been put in charge of the, to date, biggest study of myalgic encephalomyelitis despite his clear bias that ME is somatoform. Arguing that only those he has treated or who are medical doctors may criticize his published destructive beliefs is baffling. Dismissing this community’s justified and grave concerns merely because his care worked for you is misguided and frankly offensive.

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