Brian Walitt and the Psychosomaticism of Fibromyalgia: Another Look

[KME]

Cort, you already pointed out in your article that the Tesio article does not show what Walitt et al claim it does, i.e. purported discordance between subjective complaints and objective measures of cognitive dysfunction. When Walitt et al extend this to chronic fatigue syndrome, they cite two references, Capuron et al 2006 and Ocon 2013. Now Ocon 2013 does make the same claim, but look at what Capuron et al 2006 actually found: “These findings show strong concordance between subjective complaints of mental fatigue and objective measurement of cognitive impairment in CFS patients and suggest that mental fatigue is an important component of CFS-related cognitive dysfunction.” (full article free at http://www.nature.com/npp/journal/v31/n8/full/1301005a.html). Walitt is the first author of this fibrofog paper. This is irresponsible academic writing. (Not you, Cort, Walitt et al!)

 

[KME]

And again

Thanks for the references. Patients should certainly be questioning the participation of these individuals and how their personal biases about the illness could interfere with the research. It should be a requirement that all participating research/medical personnel read the IOM report before they do anything related to this illness.


Do we need to post a gigantic sign on every door in the NIH (and the CDC for that matter) that says, "ME/CFS is not fatigue!" ? I am far beyond sick of the focus on plain old fatigue in this illness. As far as I'm concerned, fatigue is a freaking minor inconvenience. PEM is a different matter. Complete and utter exhaustion is not fatigue. Immune dysfunction, neurological problems, and gut issues are far more important than fatigue, imo.

I have a big problem with whole concept of catastrophizing symptoms. It begins with the principle that patients cannot be expected to describe and evaluate their symptoms correctly. It then assumes that some doctor who sees the patient briefly and certainly doesn't live in the patient's body automatically knows better than the patient what the patient is experiencing and therefore can legitimately deny the patient's reality. At the very least it is utterly disrepectful of patients. It is illogical. It serves the doctor, not the patient to slap the catastrophizing label on a patient. It excuses them from actually having to figure out what's wrong and try to fix it. I have no respect for a doctor who makes claims about catastrophizing with very, very little evidence catastrophizing actually exists -- at least as it relates to medical symptoms.

As for the 'may help' language -- all kinds of things may help some patients. Standing naked in the moonlight may help some patients. ADs may help some patients if they also have MDD. Fludrocortisone may help some patients if they have low blood volume. We don't jump from 'may help in some cases' to 'should be tried with all patients' for biomedical interventions, why should we do so with psychological interventions? The interventions should be applied if solid evidence exists that that particular individual has a symptom not directly associated with ME for which the intervention might be applicable. Psych conditions are independent of ME and may need treatment. They should not be assumed to be a symptom of ME without a great deal more solid scientific evidence than currently exists.

Well said. I could have done with some supposed catastrophizing in the early days of my ME/CFS - I might have stopped work earlier, stopped GET earlier, and not ended up severe. It would have been sensible self-management, not catastrophizing, but as Tony's experience highlights, it would not have been viewed that way. I remember a patient at the hospital I worked at coming in with gastrointestinal distress, and plenty of emotional distress too. She had a psych history, and everyone was tut-tutting at her catastrophizing. Turned out she had a terminal recurrence of stomach cancer. It always shocked me how quick health professionals were to chuck you in the psych bucket. It makes me feel a lot of compassion for people who have psychiatric illnesses - I can only imagine how much their views are dismissed. This is where the somatoform/psychosomatic/psychogenic label really, really matters. Once it's been applied, or just been associated with a condition in the public sphere, health professionals don't trust our report. Why would they, when, according to that label, the nature of our condition is that we misperceive?

 

[dejurgen]

If I combine:

A) Walitt's use of a paper to back up this observation: "Objective differences noted on cognitive testing also correlate poorly with self-perception of cognitive deficits (Tesio et al., 2015)", suggested that he was scrambling to find supportive evidence. The Tesio paper's main conclusion referred to objective cognitive impairments - not self-perception at all.

"Our results confirmed the presence of impairments of attention, long-term memory, working memory, and shifting and updating executive functions in FM patients compared with healthy controls." Tesio 2015​

B) Meanwhile Walitt is putting a lot on that 25% difference in perceived cognitive functioning.

Then I come at:

C) No serious study nor an infamous 5 million pound study should use self-assessed improvement as the only meaningfull evidence for recovery.


Btw: As a person with a history in non-medical research I have to comment on "a) he's a coordinator - not a researcher in this study - he will not be doing studies or writing up reports"
The coördinator is often the most powerfull person in a research project: he often decides / has final decision power about what material is retained and discarded and what the take on the paper will be: will they report on objective findings or will the drop them in favor of spinning the negative results of their preferred angle of view?

 

[Onslow]

Psychological or emotional stress does affect me much more physically than it used to but to say that the illness is CAUSED by it is just crazy. I was on the top of my game when I came down with ME/CFS. I was never doing better and then wham... Once I got it - yes, for me, stress has more physical effects. I suspect that anything that affects the autonomic nervous system and HPA axis - the two stress response systems in the body - could have this effect.

Both physical and psychological stress have similar effects on the brain, so either (or both) could potentially be a cause. If you look at Noakes' research in athletes, he shows that the top athletes basically suffer from extreme psychosomatic fatigue during every race. The central governor integrates both physical and psychological inputs, and then generates the "emotion" of fatigue. (However unlike other emotions, fatigue is very difficult - and perhaps unwise - to ignore, because the central governor has inputs directly to the motor cortex). The various factors include psychological ones such as knowledge of the end of the race, emotional state, whether there are other runners, etc. Physical factors include rate of heat accumulation, glycogen stores, etc.

In your case I think you were doing a lot of running when you became ill, so it's possible that the physical stress of running was a cause. That appears to be the case in overtraining...at a certain point - after excessive exercise over a long period with too little rest - the central governor appears to shut down permanently (or at least, for a long time), to basically say "fuck this, you HAVE TO REST NOW". Psychological factors also appear to be important in overtraining, although it does appear to occur with purely physical stress (excessive exercise) as well.

It's hard to say if some or all cases of CFS are caused by this, but it certainly seems plausible, and is worth looking into.

 

[Cort]

@Cort On H2O2 and Exercise

http://bjsm.bmj.com/content/43/3/186.abstract

I have a feeling, for a lot of people, the main culprit behind CFS is H2O2. Finding out why you have too much of it being produced will lead you to a solution.

Thanks!

 

[Andrew Kinsella]

Walitt's logic is pedantic and simplistic and he is angry. How is it that he got hired? Who thought he was competent? Just for the record, all of these words are synonymous: psychosomatic, somatization, hypochondriasis, psychogenic, and they all strongly imply malingering. He can use new words all he wants but he is ridiculing sick people and getting away with it, using government funds to do it, and we are paying for it. This is where our tax dollars are going.

It is really unfortunate that this guy will have so much influence now, being at NIH. We should not have to endure the type of punishment he is dishing out, especially since he is using only the part of the literature that fits his own biases. There is a lot of very powerful evidence against what he is saying, if he would take a minute to look at studies of other types of cognitive impairment. First, the brain always compensates for weakness in one system. A weak system produces compensation in another system, but the overall efficiency of the brain is reduced. This is all part of neural efficiency studies. In a system as complex as the human brain, disease produces failures in those portions of the circuits that are necessary in order to fully comprehend, and make decisions based on many types of information that must be integrated. Then we also know that in a diseased brain, the information flow is slower, meaning that much information is just lost. I cannot go into this much here, but when the brain is slowed down, it is very difficult to form new memories (learn). These things do not show up on neuropsychological tests. This type of knowledge is, however, easily obtainable and part of many research studies.The brain just does it naturally. The fix for this? Assess premorbid functioning, and assess compensatory mechanisms through connectivity analysis! For premorbid functioning, just assess what the person was like before illness, and yes, that can be done. So, why would a researcher overlook these well-known, important facts? Why would he "oops," forget?

How is it that people with CFS/ME can drive? That is also easy and the knowledge is accessible to even first year people in research. The answer is fluctuation of symptoms. All he has to do is look at the encephalitis literature or look at any cognitive impairment literature, and there it is--the prediction that sick people with any form of encephalitis, meningitis, cognitive impairment, even brain tumors, have symptoms that wax and wane. Valerie Harper has cancer in her meninges, and her symptoms wax and wane. Does that mean the cancer is cured? Is it just a perception of hers? Again, in diseased brains the numerous processes which produce efficiency are greatly reduced, but they vary around an average of some sort, so the patient has "good days," and "lousey days." Any person with cognitive impairment for any reason will tell you that.

The point here is that these "facts" are easily explainable and the answers are already in the literature. Walitt should read Luria and some of the neuropsychologists who had so little to work with that they became incredibly adept at reading their patients. They write about these problems profusely--how someone who is ill one day appears fine the next day, about how people compensate and how to spot it in an interview. They wrote about two people never presenting the same way, even with the same diagnosis.

These problems cannot be explained by diagnoses of exclusion, or diagnosis made in ignorance. I believe we should all call out individuals who put forth this bad science and hold them to much higher standards, which include all testing viewpoints, not just the ones which support their own personal biases.

One of the big problems in this area is that traditional doctors simply do not have any other form of words than somatisation, psychogenic etc to help express their thinking.
A much better term is "functional" which simply suggests that the brain/ the mind/ or both/ have got locked in to an undesirable loop of operation- probably entirely at the subconscious level.
Ive been watching the forums for a while because i have a good friend with fibro, and I have had a chronic localised musculoskeletal pain syndrome. I managed to identify some exercises that actually break several of the functional loops and have already got my problem well on the way to resolution.

However there are all kind of difficult feedback loops that happen in chronic pain and fatigue, and they are hard to tease out effectively.