Brian Walitt and the Psychosomaticism of Fibromyalgia: Another Look

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I registered a couple of weeks ago and haven't had time to tell my full story yet. Will do. In short, after a lifetime of regular (one ,often two per year) viral flu-like infections I started to develop mild but progressive ME (towards end of 90's), with continuing regular viral attacks. From around 2004 I had 2 bouts of noro virus per year until 2010 when although my youngest brought the virus home from school I did not catch it. Since then I catch nothing even when other family members are sick. This new-found immunity might seem good news but it has corresponded with ME symptoms becoming much more severe and in particular daily cognitive dysfunction has replaced the occasional fog previously experienced. I feel my brain is physically sick although routine scans reveal nothing abnormal. So it has been a long slow decline for me with the occasional more pronounced drop in functionality form which I never recover fully.

I thinks its fair to say that because of a slow onset of ME, together with the demands of raising 4 children, I kept away from the ME community. Perhaps there was also an element of arrogance that I couldn't see how I could possibly end up disabled by this, like them I guess. However over the last year I have come to realise that if i continue to decline then there may be serious implications for myself and the family. Hence I have spent the last few weeks catching up with what is happening to and for other sufferers of these awful diseases.

Here in the UK, sufferers in England have treatment options of GET/CBT or little else and here in Wales (3 million people) there are currently no services, although the Welsh assembly (the devolved government) has directed health boards to start developing treatment pathways based upon that in England i.e GET/CBT. There are some small charities involved in lobbying for government research funding and some fund small research projects directly. There is plenty of mistrust and anger towards the medical establishment here. A glance at the NICE response following their 'victory' over sufferers in the courts has my blood boiling very quickly. So in Wales we face the prospect of GET/CBT coming to a nearby hospital and perhaps also the prospect of pressure to cooperate for fear of loosing state benefits.

So from where I am sitting, US research offers the only current hope for identifying the molecular basis for our disease(s). Until the void that is the absence of a credible medical model for ME/FM is filled, then psychiatrists/psychologists will have too much space/freedom to air their more subjective opinions on our disease(s) and in the process (unintentionally) causing hurt to some very vulnerable people. We need hard objective science to come to our rescue and I do believe that we will have detailed pathology/assays as a result of the 21st century science planned and the subsequent expansion of molecular science in this field which will follow.

As someone who worked in biological research for 15 years these guys are entitled to have their say, that is their training and science works by open discussion. The fault lies in the previous lack of funding for expensive molecular science which has produced a bias towards inexpensive, more subjective, research. In the absence of answers to the riddle of ME the problem is that world wide media will look for a simple, clear answer to report. For example our Daily Mail stated a while back that following a report that two further viruses had been ruled out of involvement in ME it is somehow more likely that this is a mental-illness, helping to strengthen the myth among the general public.

Yes there is plenty to feel angry about but I believe that if the US gov/agencies stick by their words then this bias will be corrected eventually and dignity will be restored to ME/FM sufferers worldwide.

Tony
What a great message Tony...I think you are correct - that physiological research mostly done in the U.S (but also Canada, Australia and the UK - Julia Newton et. al) will put an end to this bias and open windows that cannot be closed. I hope that the Clinical Center study and Ron Davis's study will have such significant findings that even the UK cannot ignore them...Good luck with your health!
 

KME

Member
I agree that it's the WORST word because to our minds it means a nothing disease - an unreal disease - something that is all in one's mind. Depression might actually be better because at least depression is real and serious. You really couldn't pick a much worse term.

Walitt said that he did not believe that ME/CFS is all in ones mind. He said it was in ME/CFS patients bodies. I may be missing something but I believe him because he wants to do physiological research. He could not have used a worse term though - and this outrage is what he gets for using a term with connotations like that to apply to a devastating disease.
I think what Dr Walitt thinks is that we, meaning people with ME/CFS, cause our own symptoms through our misperceptions, but that those symptoms that we have caused are biologically/physiologically real and may be treatable. This is what he thinks of people with fibromyalgia, gulf war illness, chemobrain post-cancer-treatment etc.

So he can say honestly that he thinks that fibromyalgia and ME/CFS are real and biological, but he can also honestly say that he thinks they’re somatoform. For him, these are not contradictory.

This is one of the quotes that made me see how he thinks:
“Claims that fibromyalgia causes pain or neurobiologic abnormalities need to be examined carefully so that cause and effect are disentangled, and that cause is not confused with mechanism.” (from this 2014 paper http://onlinelibrary.wiley.com/doi/10.1002/acr.22207/pdf by Wolfe, Walitt & Hauser).

So for Dr Walitt, my understanding is that he sees the cause of FM and ME/CFS as psychological, but the effect as biological. Finding biological correlates of our symptoms will not necessarily make him rethink his hypothesis of psychosomatic cause.
 

Dragonfly

New Member
Treating just the symptoms of a disease just doesn't work that we'll because the disease pushes back. Symptomatic treatment can only at best offer temporary relief. Savella, Lyrica, Cymbalta are all drugs to treat symptoms. Cognitive therapy, yoga, massage are all additional treatments for symptoms, not treatment for disease. I don't think any one of these treatments for symptoms work any better than the others, although a certain treatment might help you better than the others at a particular time. You just have to try things and see if they help you. We already have enough ineffective treatment. We are in desperate need for treatment that does work, such as disease modifying drugs like rituximbab that works for rheumatoid arthritis and may also work for us because drugs like these are disease modifiers, not just symptomatic relief. The crux of the problem is with the immune system which is out of whack. I have no control over the physiology of my brain to any significant extent. We need real help with a physiological disease, not symptom control. I'm sick and tired of psychobabble.
 

weyland

Well-Known Member
I don't see where Gill or Saligan are psychosomatic theorists. They look like straight-up biomedical scientists to me.
I don't know about Saligan, but Gill is on record as supporting CBT/GET as the only treatments, which would imply he endorses the BPS theory. He also says that patients should not receive more than simple routine tests (no viral serologies should be done) and any abnormalities are likely to be false positives. Gill was/is a huge Straus fanboy.

http://www.cfscentral.com/2011/02/training-day.html
https://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Gill.htm
 

Karena

Member
Saligan thinks that our fatigue is due to catastrophizing and can be fixed with CBT.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3553502/
Thanks for the article. I have an idea: Why don't these doctors find a cure for ME/CFS, and THEN analyze whether we're catastrophizing or exaggerating our symptoms.

Until they know what's the matter with us, how can anyone accuse us of being negative? Maybe we're just being realistic about our condition and situation.

One study in the article asked CFS patients, "What would be the consequences of pushing yourself beyond your present physical state?” If we know we're at our limit, the consequences would be bad. But if we're honest with the researchers, we may be labeled catastrophizers. I think some doctors would be happier if we just lied and pretended to be better. But our job isn't to make doctors feel better about doing their job!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Saligan thinks that our fatigue is due to catastrophizing and can be fixed with CBT.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3553502/
I'm not very excited about Saligan but to be accurate Saligan never says catastrophizing causes the fatigue in ME/CFS or the pain in FM or other conditions. Nor does he say that stopping catastrophizing would stop the fatigue. He says catastrophizing is associated with increased fatigue and that employing anti-catastrophizing methods may help manage fatigue.

This review found that catastrophizing is significantly associated with fatigue and could serve as a good predictor of fatigue severity. This observation was made on limited number and types of patients, thus further investigation is warranted to establish this relationship. Catastrophizing may be an important behavioral marker for fatigue severity and may serve as an interventional target for the clinical management of fatigue.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The "anti-catastrophizing" methods being MBCT, which is just CBT with mindfulness tacked on. If you're referencing the work of British psychs like Rona Ross-Morris et al it's pretty clear what theory you subscribe to.
You don't' think they could recognize that it's not the whole answer? Maybe be pushing their ideas as a partial help? That should be sufficient in this day and age when everything only works somewhat?
 

Karena

Member
I'm not very excited about Saligan but to be accurate Saligan never says catastrophizing causes the fatigue in ME/CFS or the pain in FM or other conditions. Nor does he say that stopping catastrophizing would stop the fatigue. He says catastrophizing is associated with increased fatigue and that employing anti-catastrophizing methods may help manage fatigue.
You're right. But if doctors don't know how we really feel or what our lives are really like, how do they know we're catastrophizing? Maybe we're describing things accurately.

After I was diagnosed, I had some neuropsychological testing. I remember agreeing with the statement, "I am very worried about the future." The neuropsychologist probably assumed I was catastrophizing. But I had every reason to worry. Like many people with ME/CFS, I ended up losing my career, friends, financial security, etc.

I'm for anything that helps a ME/CFS patient deal with this disease. We need as much or more support than people with other chronic illnesses. I'm just leery of anything that smacks of CBT.
 

Dan Neuffer

Member
Hi Cort
Long time no speak! :playful:
Well, I have no problem with the term psychosomatic as I don't feel it really suggests that it is "all in your head". In fact, I expect that anybody that has really experienced ME/CFS/FMS would testify to the fact that psychological stress is difficult to cope with and can cause flare ups.
But I must admit that I take some exeption to "patients subjective experience of their cognitive abilities do not reflect the cognitive losses" - because that does sound like it's 'all in your mind'.
I have stories about my cognitive issues/brain fog that I am still embarassed to share years after recovery. Any suggestion that these issues are not 100% real or are due to our perception, is just plain ridculous - we all agree on that right?
Dan
 

weyland

Well-Known Member
You don't' think they could recognize that it's not the whole answer? Maybe be pushing their ideas as a partial help? That should be sufficient in this day and age when everything only works somewhat?
They may well think that but I have no tolerance for literature reviews and researchers that further bolster the British BPS position. Especially when the people responsible are from the US NIH and will be working on our new study.

I'm not sure what else to say. Saligan's review was published in the Journal of Psychosomatic Research. Most of his CFS references are to British BPS types. Does this sound like someone who has a biomedical approach to CFS?
 

IrisRV

Well-Known Member
I don't know about Saligan, but Gill is on record as supporting CBT/GET as the only treatments, which would imply he endorses the BPS theory. He also says that patients should not receive more than simple routine tests (no viral serologies should be done) and any abnormalities are likely to be false positives. Gill was/is a huge Straus fanboy.
:yuck:
Saligan thinks that our fatigue is due to catastrophizing and can be fixed with CBT.
And again :yuck:

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.

I'm not very excited about Saligan but to be accurate Saligan never says catastrophizing causes the fatigue in ME/CFS or the pain in FM or other conditions. Nor does he say that stopping catastrophizing would stop the fatigue. He says catastrophizing is associated with increased fatigue and that employing anti-catastrophizing methods may help manage fatigue.
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. :rolleyes: 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.
 

IrisRV

Well-Known Member
Well, I have no problem with the term psychosomatic as I don't feel it really suggests that it is "all in your head".
No it's not all in your head. By definition, psychosomatic conditions have physical symptoms which are not imaginary. It also means that while you have real symptoms, they are caused by faulty thinking. So it's not all in your head, but your 'head' is the root cause of the symptoms, not something biomedical. That then leads to the conclusion that the treatment should be based on your faulty thinking, not the symptoms themselves.

As far as I'm concerned the 'not all in your head' argument is simply more of the psych weasel-wording designed to make us (or the public) more accepting of their offensive ideas.

Psychosomatic” disorders have definite physical symptoms but are thought to be caused by emotional or psychological factors.
In fact, I expect that anybody that has really experienced ME/CFS/FMS would testify to the fact that psychological stress is difficult to cope with and can cause flare ups.
I have really experienced ME/CFS down to the bedbound level. Psychological stress affects the state of my health no more than it does the average person. However, the fact that stress may exacerbate symptoms of any illness doesn't make the illness psychosomatic. Exacerbation doesn't mean the condition is caused by emotional or psychological factors.
 
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Dragonfly

New Member
Every illness or injury has a psycho-social component. But are you going to make the psycho-social elements the main focus of your treatment? If you went to the ER for treatment for a broken arm, you would need an Xray and a cast. You wouldn't focus on getting a hospital chaplain or psychologist in the ER to speak with you about your feelings. I think it's just as ridiculous to focus on your feelings when you're in a flare up. I can get spiritual help from my own minister. I can talk about my feelings with the friends and family I already have. I'm well past needing that sort of thing from a medical professional. I need treatment for the disease itself, not help with spiritual/social problems.
 

gowwab

Member
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.
Amen.
I think we do. I also haven't been fatigued in years because I can't be upright long enough to get fatigue because my legs don't work and my head spins when I try. They are not tired muscles but partially paralyzed and some weird crap. I bet many of us don't even have fatigue in our top 5 list, especially after many years.

I don't know, maybe having REAL experts might help them learn. But no they want to act like they are the almighty NIH and don't need help from the peons who have been working on this and believing it is real and trying to use medicine and tests to help thousands of patients for decades.

More and more after taking some time to see the little sneakiness of the rollout and participants. I feel like they either just don't get it or they don't want to. If they wanted to get it right they would have include people in the design who would have noced all these yahoo "experts" they said they did consult but who would have packed the clinicians with not just 1 but all psychobabblers as the experts? Nath gives me hope but even he needs a real clinician to help his study work.

Actually I am tired. I'm tired of the NIH HHS and CDC making everything a fight. Is it the insurance lobby? Straus is gone yet they still fight. Why? I think we got real lucky with the IOM after having to fight to get some of our people on there. I think of all the Gulf War Illness IOM studies and can't believe with basically the same disease they got officially shut down.

The request to remove Walitt was and is reasonable and necessary.
 

Tony L

Active Member
Thanks Cort and thanks for the work you and your team do here. Not sure how you do it but very thankful you can. Of course there is some top class science in progress around the world but we need the powerhouse of US science to make up for lost time and to make sure that we have detailed definition of the physical manifestation of our illness(es).

I am finding following the discussion personally rather distressing as it making me realise how difficult it is for me now to process information and apply it. Anyway here are a few thoughts.

Have been trying to get into the psychosomatic idea. To me psychosomatic is applied to situations where there may be or may not be a physical manifestation of disease, both supposedly linked to some state of mind. My understanding of the more extreme psychiatric offerings is that somehow in the mind of the sufferer it might be in their interests to maintain the state of ill health which has been triggered previously by a physical agent or some form of anxiety. An avoidance strategy. So what am I trying to avoid? What I do seem to be avoiding are the things that I used to enjoy- Photography, as that creative (photographic eye) part of my brain has shut up shop for almost a year now and fishing over the winter because if I go out in temps below 10C I get very unpleasant muscular pains which I sensibly choose to avoid.

Those stats from the UKs ME association. Great work by one of our UK charities to highlight the dangers of implementing a frightening medical ideology.

As for the discrepancy between a sufferer's perception/response to symptoms and that of an external observer. From my own experience I have a very difficult job to do in managing my own illness. Nobody else can do it for me. Symptoms fluctuate from day to day and within every day. Some days I can listen to what my body is saying, other days I have no choice but to override the warning lights and get on with whatever the family demands are. I have to make judgments as to what I can do in the light of the things that I have had to do (with resulting consequences as to my symptoms). It is risk management based on experiences with my own bodily dysfunction. I was referred to a consultant (in General medicine) a couple of years ago who after a physical examination asked me whether I would be able to get into my car the next day and drive the 5 hours from my home in west Wales to central London. I explained that based upon my ME symptoms I considered that too much of a risk. She argued with me that I had simply lost confidence in my driving. I tried to explain that it was my body that I had lost confidence in and justifiably so.
So after a physical examination the medic assumes a mental problem/loss of confidence. Whereas from my perspective I am making appropriate responses to manage my life in the face of the wide ranging and fluctuating symptoms of my physical disease.

Tony
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Amen.
I think we do. I also haven't been fatigued in years because I can't be upright long enough to get fatigue because my legs don't work and my head spins when I try. They are not tired muscles but partially paralyzed and some weird crap. I bet many of us don't even have fatigue in our top 5 list, especially after many years.

I don't know, maybe having REAL experts might help them learn. But no they want to act like they are the almighty NIH and don't need help from the peons who have been working on this and believing it is real and trying to use medicine and tests to help thousands of patients for decades.

More and more after taking some time to see the little sneakiness of the rollout and participants. I feel like they either just don't get it or they don't want to. If they wanted to get it right they would have include people in the design who would have noced all these yahoo "experts" they said they did consult but who would have packed the clinicians with not just 1 but all psychobabblers as the experts? Nath gives me hope but even he needs a real clinician to help his study work.

Actually I am tired. I'm tired of the NIH HHS and CDC making everything a fight. Is it the insurance lobby? Straus is gone yet they still fight. Why? I think we got real lucky with the IOM after having to fight to get some of our people on there. I think of all the Gulf War Illness IOM studies and can't believe with basically the same disease they got officially shut down.

The request to remove Walitt was and is reasonable and necessary.
I think the request to remove Walitt is reasonable. His psychosomatic idea is anathema to just about everyone in the ME/CFS community. I don't think he's going to hurt the study but he's aroused a lot of worry and upset and it would be best if he was not part of it.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
No it's not all in your head. By definition, psychosomatic conditions have physical symptoms which are not imaginary. It also means that while you have real symptoms, they are caused by faulty thinking. So it's not all in your head, but your 'head' is the root cause of the symptoms, not something biomedical. That then leads to the conclusion that the treatment should be based on your faulty thinking, not the symptoms themselves.

As far as I'm concerned the 'not all in your head' argument is simply more of the psych weasel-wording designed to make us (or the public) more accepting of their offensive ideas.

I have really experienced ME/CFS down to the bedbound level. Psychological stress affects the state of my health no more than it does the average person. However, the fact that stress may exacerbate symptoms of any illness doesn't make the illness psychosomatic. Exacerbation doesn't mean the condition is caused by emotional or psychological factors.
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.
 

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