Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic.
In 2015, Walitt co-authored a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity of subjective experience and that of objective impairment.”
Similarly, in an interview with Family Practice News, Walitt described fibromyalgia as a “psychosomatic experience,” part of the “range of normal,” rather than an abnormal disease state; a way of “dealing with the difficulties of just being a human.”
Here is the video and a complete transcription of Dr. Walitt’s video interview “Fibromyalgia doesn’t fit the disease model” for Family Practice News.
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Interviewer: What shall we do to try to help patients with fibromyalgia?
Dr. 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 and we should stay with them over the length of their struggle; we should bear witness to their difficulties,s which is the oldest of the jobs that physicians do.
One of the interesting things about this talk is that people come in with a set of beliefs and a lot of those come from what they’ve been taught and what they see on television and what their patients come to their offices with–there are these ideas of, you know, fibromyalgia as 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 that narrative and answering the questions in terms of that narrative, but deep down they know that it’s not true and by the end, after I say my message, they’re relieved to hear that deep down, their beliefs are not wrong and that really what may be required is not saying that fibromyalgia is not real, but finding a new narrative in which to discuss it–one that makes much more sense–to everybody.
Interviewer: Do we have any idea, yet, what narrative might be more useful?
Dr. Walitt: Ah, that’s a tough question–the problem is that language is so heavily charged. People are not willing to accept the idea that our emotions affect our sensation, right, the idea that mind itself is able to create these things and that all experience is a psychosomatic experience. Nothing exists without your brain creating those sensations for you and the idea that that process of creation can create these things and is supposed to create things like this to inform us and to teach us and to guide our behavior pushes against the idea that we have free will and that we can do whatever we want and that we should be able to lead the lives that we have always thought we should lead–not the ones that our bodies are restricting us to. And so accepting those kind of ideas is not so easy–that might make it a little bit easier on everybody; that might be a more palatable narrative, understanding that, you know, people can feel bad for no real fault of their own, because of the circumstances of lives and how brains just work–the way it’s supposed to be–as opposed to being sick. There’s a wonderful line from this gentleman Joel Higgs, “When people are atypical, societies do one of three things: They either medicalize, criminalize, or moralize.” And so when you find people with thing like fibromyalgia, you’re either going to be sick, bad, or weak–and the idea is really to find a fourth way–to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human.
Interviewer: Brian, why did you title your talk on fibromyalgia as ‘Tilting at Windmills’?
Dr. Walitt: Well, I wanted to invoke Don Quixote’s quest to slay a dragon. Fibromyalgia is a very challenging thing for physicians to deal with and the idea that there are easy answers that can be prescribed to one’s patients is kind of a fallacy and I thought that that title would bring that out.”
Interviewer: What are the difficulties of dealing with fibromyalgia?
Dr. Walitt: Well, as physicians, we have a limited amount of time in the office and our training is to use medications to deal with the problems that we see in front of us. And fibromyalgia as a disorder defies all of that. It requires a lot more time and medications do not work very well. And if you try to adhere to how we’ve been trained to treat people, you’ll inevitably fail.
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 an underlying biology to it, but the idea that it’s an abnormal biology 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 is something that seems self-evident, but also something that we like to pretend isn’t true.
We would love it if we could reduce all of these things to a simple pathway. You know, science has had all of its greatest successes in reducing problems to a single pathway, a single place and all the, you know, if you take diabetes, understanding the key role of insulin in diabetes, once that was understood, it transformed the whole illness and allowed for people to become better. The problem with things like fibromyalgia and other disorders that are of the neurologic systems of the brain is that the brain seems to have a duel existence. It exists both as a biological construct, but it also exists as sort of a psychological construct and we don’t really understand how the two go together yet, how they play together, how they sing together, how they work together–and so our attempts to alter biology without understanding the emotional overlay probably leads to a lot of failure. It speaks to our lack of understanding of how it really works.
Interviewer: What is fibromyalgia?
Dr. Walitt: That’s a hard one. Time will tell. Fibromyalgia appears to be a way that people experience suffering in their body, both from the way that their 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 is–one of those experiences is fibromyalgia. Is it a disease or is it a normal way that we handle and are supposed to work is still to be determined. But it’s quite possible that the tricky way that the brain works is that we may create symptoms as part of how we are supposed to operate, as opposed to this representing the system breaking down.
When you talk to patients with fibromyalgia and you ask them what they think about it, they can often provide you the answers about where they should go. People with highly spiritual feelings and believe in spiritual forces as potential ways to heal should be referred that way. People who believe in exercise should go that way. People who believe in Eastern philosophy should be referred that way. Taking a one-size-fits-all or using your own judgment of what is legitimate is often not helpful in treating people with fibromyalgia because it’s really about what they think is legitimate.