An MEAction Post titled "
NIH lead clinical investigator thinks CFS and fibro are somatoform" has raised a furious storm. It focuses on Brian Walitt- the lead "clinical investigator" in the NIH's Clinical Center study that involves almost 30 other researchers.
The post states:
[fright]View attachment 1012 [/fright]Brian Walitt is the lead clinical investigator for the NIH’s new
intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic.
In 2015, Walitt co-authored
a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity of subjective experience and that of objective impairment.”
Similarly, in an interview with
Family Practice News, Walitt described fibromyalgia as a “psychosomatic experience,” part of the “range of normal,” rather than an abnormal disease state; a way of “dealing with the difficulties of just being a human.”
Here is the video and a complete transcription of Dr. Walitt’s video interview “
Fibromyalgia doesn’t fit the disease model” for
Family Practice News.
Do you think Walitt should be involved in this landmark study? Leave your comments for the NIH below.
A
transcript of an interview with Walitt on fibromyalgia was also posted which has been interpreted to read that Walitts believes FM is not a disease, that patients are not sick, that the disease is all in one's mind.
Not surprisingly, the comments to that were both anguished and furious.
- "It shows how little you think of our disease and you have no intention of helping us at all."
- "It is proven to be biological and neurological. Not Psychological"
- "He is obviously not a specialist in this illness, or he would understand the connection to physical aspects."
- "This man cannot, I repeat, CANNOT, be a part of anything to do with our studies or our work."
- "Anyone who believes this is psychosomatic is themselves crazy and should not be on the panel."
One blog went so far as to assert that "Walitt really doesn’t seem to see a point in researching a biological basis for fibromyalgia" and called the study "PACE on steroids".
The Interviewee - the Family Practice Interview
There's no doubt that Wallit's strange interview is subject to multiple interpretations - some of them very upsetting. It's hard to understand. I propose an alternative interpretation to some of the more problematic parts of the short interview: that Walitt is talking about a narrative not a disease.
In the interview Walitt described FM as a difficult disease that the medical profession can’t help that much with. That theme - that the medical profession isn't very good at helping FM patients - runs throughout his work. Wallit has co-authored several papers suggesting that drug therapies provide little real help for FM patients and makes no bones about that. In fact, in another interview, Walitt asserted that "a return to a happy and pain-free life because of modern medicine" basically isn’t happening in FM. He stated:
[fleft]
View attachment 1013 [/fleft]Walitt steps into touchy territory, however, when he posits that
all experience is psychomatic experience.
Studies indicate that negative emotions or stress often worsen pain and other sensations, etc. and that's probably so for many people with ME/CFS or FM. It's not clear what Walitt means by "these things" when he states the mind is "able to create these things" but he does says that your brain is creating these sensations.
When Walitt talks about a "narrative" people can take to towards FM that can help relieve their suffering, I belief that he's talking an approach to the disease - not about the disease itself. He suggests one such a narrative might be that FM patients are "dealing with the difficulties of just being a human". Given his belief that there's little modern medicine can do to help FM, that approach makes some sense.
This perspective could be construed as being is similar to that seen in Buddhism where having an illness is simply part of being human. We're all going to be sick - have our bodies break down - whether earlier or later - at some point; i.e. this is one of the difficulties of being human.
Wallitt asserted that FM patients brains are creating sensations that are causing them pain and inhibiting them from doing what they want to do. That's inherently upsetting particularly to people in western societies who believe that good health is their god given right but Wallets asserts that that narrative is unhelpful in FM.
Instead of ignoring the pain Walitt suggests that FM patients should allow their behavior to be guided by it. That, of course, is the opposite approach to that suggested by some CBT/GET practices.
He suggests dropping the word sick which has negative connotations and adopting a different narrative that essentially says that bad things can change how our brains work…
It is without a doubt a strange interview. Walitt the researcher, however, is not nearly so problematic.
The Researcher
When you look at Walitt's body of work and, in particular, the paper cited a very different picture emerges, however. Walitt does characterize ME/CFS and FM as psychosomatic disorders but he does not believe they are psychological illness, or that behavioral therapies like CBT are very helpful. Instead he believes that pathophysiological changes in the brain triggered by an immune response are causing these diseases and he proposes that immune modulators are likely to be helpful. In short, he's walking a similar investigative path as Jarred Younger and other ME/CFS researchers.
Walitt has focused mostly on FM and rheumatoid arthritis. His FM prior work included a
gene expression study that highlighted immune genes and study suggesting that
FM should not be listed as somatoform disorder in the latest DSM revision. Other study topics include
childhood maltreatment,
SNRI effectiveness,
SSRI effectiveness,
brain white matter in GWS,
PET scans of FM brains,
another gene expression paper and
symptom scales.
The Psychosomatic Approach
Walitt's statement that FM and chronic fatigue syndrome are psychosomatic disorders occurred in a paper tied
Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy" which Walitt co-authored.
Chemobrain is akin the "brain fog" and "fibro fog" experienced in ME/CFS and fibromyalgia. The cognitive problems in ME/CFS and FM are similar, the paper proposes, to those found in chemobrain.
[fright]
View attachment 1014 [/fright]The psychosomatic part comes from Walitt's observation that the cognitive impairment found on tests is more modest than one would expect given the issues cited by patients. That discordance between patient complaints and the results of objective testing is, the authors state, the hallmark of somatoform illnesses. (Overviews of cognitive testing in ME/CFS tend to describe the impairments found as relatively mild.)
The authors believe that the cognitive problems in ME/CS, FM and chemobrain:
They suggest that a variety of triggers including chemotherapy and psychological distress and others are able to trigger illnesses such ME/CFS and FM that alter perception.
Pathophysiological Disorders
The perceptual thesis, however, doesn't mean that these diseases are psychological. Walitt believes the perceptual problems he believes are found in ME/CFS and FM are probably caused by immune dysregulations in the brain and places the "psychosomatic disorders" such as chemobrain (and ME/CFS and FM) firmly within a pathophysiological construct. The authors believe that the
They propose that rapid shifts in cytokines lead to epigenetic alterations that essentially reprogram the brain. How this happens is not clear but the authors propose that cytokine changes begun in the body by the initial trigger get transmitted to the brain where they become permanent. They believe a common pathway in all these diseases exists.
They signal out the microglia as being key players but admit that they have no idea how they affect cognition. They list, though, a number of possible factors many of which many be familiar: glutamate induced damage, altering serotonin, dopamine, norepinephrine nerve transmission, GABA, acetylcholine, neuropeptides, and nerve growth factors (BDNF) increased levels of oxidative stress, nitric oxide.
Epigenetic changes which produce permanent changes to gene expression are the key. They point to research indicating that epigenetics play a critical role "brain development, memory formation, and more importantly, in regulation of learning and memory."
When turning to treatment they turn not to CBT or psychological therapies but immunomodulating drugs such as monoclonal antibodies (e.g. Rituximab), TNF-a reducing agents (etanercept), P2×7 antagonists, BDNF enhancers, S-adenosyl methionine (SAM), Betaine and histone deacetylases. They're exploring many of the same biological pathways that researchers exploring neuroinflammation and others posit are involved in ME/CFS.
Finally, in a paragraph that could be taken right of the study protocols for ME/CFS, they propose administering a "major physiologic stress" (e.g. exercise) and observing its biological ramifications to uncover the mechanisms at work.
Conclusions
In these complex and evolving areas it's best to assess researchers on their broad bodies of work. Because no consensus about the kinds of diseases ME/CFS and FM are has been reached in the medical community they're viewed in a variety of ways. It's interesting that researchers who may categorize the diseases differently may nevertheless largely agree on what might be causing them. Such is the complex world we live in.
[fleft]
View attachment 1015 [/fleft]Walitt and his colleagues belief that whatever is happening in ME/CFS and FM is mainly altering perception may rankle. It's important to note, though, that Walitt does not propose altering disease beliefs or mindsets; the problems in these diseases are more entrenched than these simple solutions. Nor does he believe that one can push through these diseases; patients should allow the symptoms produced in them to guide them in their behaviors.
Instead what Walitt believes are causing these diseases, how he purposes to study them and how he proposes to treat them is broadly in line with much ME/CFS and FM thought. He proposes these diseases are immunologically caused and that immunological treatments will ultimately be used to defeat them. He also proposes that severe physiological stressors be employed to identify the mechanisms causing them. That's a study protocol, of course, that has been employed successfully in ME/CFS for quite some time.
Next Up - A Look at the NIH's Clinical Center Study
However, I don't think he's going anywhere. The NIH wants him as the paper pusher running the clinic and they're not backing down. Given that's the case, I think we need to maintain perspective about how much damage he can actually do given his position (not much) and save our energy for more effective battles.
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
