• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Psychosomatic medicine and ME/CFS.

adreno

PR activist
Messages
4,841
I think psychology is useful as a discipline, but not for explaining disease. There are lots of things that psychology can help to understand, such as the workings of attention, communication patterns in the workplace, or how norms in society affects individual decisionmaking, just to give a few examples.
 
Messages
3,263
I believe after long thought that there are psychosomatic disorders.
Nice of you to answer, @EllenGB.

@Valentijn points out the we need to distinguish between emotional response and chronic illness, very different inference being made here. I also think this is a very important distinction to make.

When it comes to chronic illness, the evidence base does not seem strong to me. Studies rarely use an adequate control group (one suffering from another illness that imposes similar symptoms/limitations). This is true of the IBS literature too. @TiredSam also has problems with some of the key constructs and I sympathise. Remember the Type D personality debarcle?

Add to that recall bias (more likely to attribute symptoms to prior history if you've been "primed" to do so), publication bias, and citation bias (tendency for psychosomatic studies to cite confirming rather than disconfirming evidence), and it all starts to look very weak.

Until I see much, much stronger evidence, I'm not ready to leave the IBS sufferers - or anyone - to the mercy of the psychosomatic theorists. We have seen here the harm that such attributions can do if they are incorrect.

I appreciate you answered off the top of your head, @EllenGB. which is never easy. So there may be other better cases/evidence out there. But as it stands, I'm yet to see a lot of reasons to judge @A.B.'s original comment as unfair; it looks pretty fair to me.
 

EllenGB

Senior Member
Messages
119
But these are anecdotal reports produced by for-profit organizations. They have an incentive to produce these reports, regardless of veracity. There was one such organization which was discussed on the forum here where several anecdotal reports were actually from the same person, and seemed to claim repeated cures for different problems. Though they were presented separately and sounded like discreet cases unless looking quite closely.

To the best of my knowledge, there has been no research showing that these programs are successful for anyone, with any problem. Until they at least attempt such a thing, I view them as more unsubstantiated and exploitative quackery.


Is IBS psychosomatic? Is there proof of that somewhere? I thought there was simply lack of proof of causation, and some preliminary evidence suggestive of physiopathology.

Meghan Arroll published a study on the LP. I'm feeling a little uncomfortable about constantly having to justify my views. Of course there is evidence of psychological influences in IBS, and I even wrote something with Prof. Dancey, a sufferer, explaining. There are cases under this umbrella term where diet and dysbiosis also play a significant role but psych factors do too.

I don't give opinions without having evidence. I wonder if the male physicians get a similar grilling. Don't use me to challenge psychosomatic medicine because I'm here and you can't grill White, Wessely, Chalder et al.

If you don't trust my views and don't regard me as an honest, competent professional, so be it. I can't keep justifying myself. It's too exhausting and I don't think it's a good way of spending limited energy. Sorry.
 

Cheshire

Senior Member
Messages
1,129
I'm feeling a little uncomfortable about constantly having to justify my views. [...] I wonder if the male physicians get a similar grilling.

It's not directed to you specifically. That's the way this forum goes. Everyone here is regularly asked to justify one's view, and I think it's part of constructive discussion. Putting this on assumption of sexism is quite weird to say the least.
 

A.B.

Senior Member
Messages
3,780
I did not intend to start a discussion between forum members. It's probably best to avoid any infighting between forum members.

This was not a personal attack. I just don't see any science behind these claims, and I worry that once PACE is discredited and CBT and GET for CFS effectively dead, its former supporters will just continue playing the same game with slightly different labels, different patient groups, same bad practices.

I think it's time that these sections of psychiatry and psychology are held to a high standard. Real harm is done to patients. Until they can demonstrate that psychosomatic illness isn't just a figment of their imagination, and the associated treatments a placebo, they should have no place in medicine. For the cost of the PACE trial alone a large biomarker discovery project, or one or more Rituximab studies could have been funded.

The situation is a disaster that is the direct result of tolerating and believing claims that as far as I can see have no scientific basis.

I hope that explains the reasoning for my comment.
 
Last edited:
Messages
3,263
Right, @A.B. and @Cheshire. The forum - at least this part of it - is for fleshing out arguments. People's views are judged on the basis of the arguments they make. This applies equally to experts and complete novices, no-one gets a free ride. Even @Jonathan Edwards, who has great expertise in an area we particularly value, gets grilled - and I think (most of the time!) he enjoys that challenge.

So please, don't take it personally, @EllenGB. Anyone claiming that LP is successful would be asked to justify this claim. The stronger and more unusual the claim, the more a person will be asked to justify it.

Providing new information is always good though, and never criticised. We're really interested in that.
 

adreno

PR activist
Messages
4,841
There are cases under this umbrella term where diet and dysbiosis also play a significant role but psych factors do too.
Can this be put into a falsifiable hypothesis?

And I do think you have to defend your view. Doesn't it go with the job description?
 

EllenGB

Senior Member
Messages
119
It's not directed to you specifically. That's the way this forum goes. Everyone here is regularly asked to justify one's view, and I think it's part of constructive discussion. Putting this on assumption of sexism is quite weird to say the least.

Woolie: I didn't claim LP was effective. I challenged the diagnosis of ME if LP 'cured' it. That's different. My caism aren't unusual and what was often responded to were not strong and unusual claims. BTW, possible error, it might have been Crawley who published research on LP.

Look at the responses to my posts (count and compare with responses to the two doctors on this thread.) Re role of personality, CBT might help those alleged to have personality traits that work against them. We're going severely off topic. This thread is about the BMJ, not the validity of the concept of psychosomatic symptoms/illness.

Grilling is good but I can rarely post without a comment making me justify. Please do not use me to vent your understandable frustrations with colleagues who are not so into accuracy as I am. Please accept that there are good and bad and support the former. I've had more than 30 years of ME patients challenging me (strangely the gynae patients rarely did), and I've made a lot of good calls. I don't know how you can assess who is good and bad if you're a newbie but the veterans here should know by now that like Drs Edwards and Shepherd, I'm pretty professional about my work. Just keep it in mind.

I really do not wish to continue to defend psychosomatic medicine as this is not the thread and I'm not well. I'm focused on the editorial policy of the BMJ. I'm thrilled that so many now realise how the bias has impacted the ME world, and that things have not changed in recent years. In my view, what the BMJ and Lancet do re ME is a scientific scandal. It would not be tolerated by oncologists, gynaecologists, rheumatologists and other specialities. So pleased we're dealing with this issue now. Let's leave psych medicine behind. Don't let that distract from a serious problem.
 

EllenGB

Senior Member
Messages
119
Until they can demonstrate that psychosomatic illness isn't just a figment of their imagination, and the associated treatments a placebo, they should have no place in medicine.

A generalisation based on ???? Especially after my earlier posts. They clearly didn't impress.
 
Last edited by a moderator:

EllenGB

Senior Member
Messages
119
Putting this on assumption of sexism is quite weird to say the least.

Because the (male) physicians don't quite get such as grilling and are not asked to justify quite as often. I'm originally from gynaecology and endocrinology and I have never has such a tough time as I have in the ME world. But irrespective of the subject, I don't offer an opinion unless I'm pretty clear there's evidence to back it up. That is why I spent so many years challenging the CBT model and treatment for ME. The evidence there is so poor.

After 30 years of grilling, and seeing people don't recognise your expertise, I'm probably burnt out. Sorry but disabled scientists who keep on fighting brick walls like the BMJ are few so if you don't take that into account, I'll have to leave. I can cope with the BMJ issue but not with psychosomatic medicine and claims that are quite wild and remind me of generalisations about , well never mind.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I don't give opinions without having evidence. I wonder if the male physicians get a similar grilling. Don't use me to challenge psychosomatic medicine because I'm here and you can't grill White, Wessely, Chalder et al.

Over the last decade and a half I have noticed a tendency of forums (regardless of the topic of the forum) to form 'cliques' and to be a bit more critical or dismissive of new members, particularly those who have a background with some authority.

I'm not sure it is purely a gender thing. I daresay internet forums seem to be much more egalitarian than in real life.
There are many examples of when Jonathan Edwards and Charles Shepherd have certainly been challenged and they often have something interesting to say after being challenged.

But we should definitely take your latter suggestion on board - it is possible that some are questioning you because they feel frustrated that they can't grill White, Wessely, Chalder et al.
 

A.B.

Senior Member
Messages
3,780
A generalisation based on ???? Especially after my earlier posts. They clearly didn't impress.

A generalisation based on history.

Franz Alexander wrote about the "holy seven psychosomatic diseases" in the 50's. These were considered to be prime examples of diseases caused my mental and emotional factors, to be treated with psychotherapy, and included bronchial asthma, rheumatoid arthritis, peptic ulcer, hyptherthyroidism, ulcerative colitis.

These are just a few examples. History is constantly repeating itself. Yesterday's psychosomatic diseases are today's medical diseases. The line of thinking that leads some to conclude that an illness is psychosomatic is fatally flawed. There is a systemic flaw that results in the same mistakes being made over and over again.

ME/CFS as psychosomatic disease is fading and slowly turning into a medical disease, but unless the systemic flaw is corrected, the same mistakes will be made in some other area. Even if some subset of ME/CFS is proven to be autoimmune (a realistic possibility) the psychosomatic establishment may still attempt to hold onto it, by claiming there are important psychosocial components to it and accusing everyone who questions this as being in denial and victim of dualistic thinking.
 
Last edited:

EllenGB

Senior Member
Messages
119
I originally challenged generalisations about psychosomatic medicine that could be interpreted as reflecting prejudice. As per the CBT model. I'm keen not to reinforce the stereotype of the prejudiced ME patients so I responded.

I would not comment on something I knew to be out-dated, or unlikely, or bad science. I am well aware that conditions like PND had an interesting history (came under neurasthenia, linked to hysteria etc). I KNOW all that. You can take what I write as based on best evidence. I correct errors. I am pretty good as a reliable resource on psych issues. Can I justify that? Read my articles, letters etc and see how I saw all this mess coming in the 1980s. A history of good calls.

If you know better, please state your qualifications and a reference to show I'm wrong. I may be wrong on things and am happy to learn. But generalisations from dubious sources is something that has undermined understanding of ME and I don't rate it. As I don't accept ME is CFS until there is evidence. I specialised in ME. CFS is too broad a concept for me. Personal view. I was not called a nitpicker for nothing.
 

EllenGB

Senior Member
Messages
119
Simon Wessely is a psychiatrist, and I've no qualification in psychology. Am I to take all he says to the letter?
The argument of authority is, I'm afraid, quite tricky.

Ok, so you don't accept that there are good psychs, like me whom you can trust. I've spent years challenging the views of the CBT fanclub, based on scientific knowledge and arguments, but not what I've read in the Sun.
 

lansbergen

Senior Member
Messages
2,512
Ok, so you don't accept that there are good psychs, like me whom you can trust. I've spent years challenging the views of the CBT fanclub, based on scientific knowledge and arguments, but not what I've read in the Sun.

Do you still have the website? If so, can you give the link?
 

Cheshire

Senior Member
Messages
1,129
Ok, so you don't accept that there are good psychs, like me whom you can trust. I've spent years challenging the views of the CBT fanclub, based on scientific knowledge and arguments, but not what I've read in the Sun.

I don't see how could you infer from what I said that I think there are no good psychs. I just challenged the argument of authority you used.

And I didn't question your years of challenging the biopsychosocial model. Asking questions doesn't mean we reject all your work. I'm really sorry you take things so personally.
 
Last edited: