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.)

Only 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’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.

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:

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.)

***

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