Who was it that said being in support groups leads to poor outcome?

Speaking of prejudices. Their illness model is simply a rephrasing of the usual prejudices patients face: laziness becomes deconditioning, and hypochondria becomes unhelpful illness beliefs.

 

Closer study of the dates of the various articles previously quoted tends to absolve Sharpe of primary responsibility for the statement.

The Abbey article published in 1993 was delivered at a conference between 12-14 May 1992. The Sharpe paper referred to is also dated 1992.

However the British Medical Bulletin in which the Woods and Goldberg paper appeared was dated October 1991. They were from the "Mental Illness Research Unit" University of Manchester. Sharpe and Abbey may be given some benefit of the doubt as it is unclear what their view is of causation. Woods and Goldberg leave little doubt as to their beliefs, yet, on this point, they give the impression that they are merely commenting on what has been said before.

I am trying to locate the 1991 Wessely article quoted.

 

OK. I did a search for the 1991 Wessely book chapter, and this 1989 paper came up instead:

Wessely S, David A, Butler S, Chalder T. Management of chronic (post-viral) fatigue syndrome. J R Coll Gen Pract 1989;39(318):26-9.
[Commentary here: pdf]

But it doesn't explicitly blame support groups for poor outcomes.

Then there's this letter from 1990:
Wessely S, David A, Butler S, Chalder T. Management of post-viral fatigue syndrome. Br J Gen Pract 1990;40(331):82-3.

and this study from 1991:
Butler S, Chalder T, Ron M, Wessely S. Cognitive behaviour therapy in chronic fatigue syndrome. J Neurol Neurosurg Psychiatry 1991; 54(2): 153–158.

...in which they get progressively more impatient with patient "self-help groups" and say:

I can't seem to track down the 1991 book, because it seems to be this one: Jenkins & Mowbray (eds). Post-viral fatigue syndromes. Wiley 1993.
[There aren't any previews available so I might see if I can get hold of a copy]

Also found on my travels, Ho-Yen's criticism of Wessely's study:
Ho-Yen D O. Patient management of post-viral fatigue syndrome. Br J Gen Pract. 1990; 40(330): 37–39.

 

I hope to have the book shortly thanks to Amazon's second hand book dealers. I will report back in due course.

 

Ha! Me too!

 

The whole section of that part of the overview is quite revealing:

The Eisenberg reference is available here: pdf

I wondered whether there was anything in Sharpe's contribution, and found this (again, not explicit):

The ToC for the whole issue is here.

 

Aha - might have guessed I would get closer by looking at Wessely's contribution:

 

One aspect of this which I have just noticed is that Goldberg, a co-author of such egregious nonsense, was a "scientific editor" along with Behan and Mowbray of that British Medical Bulletin edition. The fact that he was from the "Mental Illness Research Unit" (EDIT to make sense) tells us something about the false illness beliefs of the time.

"The disorder is kept going by disease conviction, by maladaptive beliefs about possibilities of improvement, and by abnormal illness behaviour in that exercise is avoided and the patient becomes "detrained". There may also be other secondary gains of the sick-role in individual cases...."

Someone must have known about these views before he was appointed.

 

At first I believed I was ill, but then was told it was a personality problem, and so I tried to believe that instead (I was just an innocent child), and it only made me feel bad about myself and made me sicker as I continuously tried to resume the old activity levels. I fervently believed I would improve, if not soon then maybe in a few months. I did not avoid exertion and harshly forced myself to function as well as I could. Being ill did not come with advantages, it was horrible, and I was frequently disbelieved and belittled. These psychiatrists are out of touch with reality and dangerously incompetent. These theories tell us nothing about the patients, only something about its proponents.

Contact with other patients has been good for my mental health, although I was also given bad treatment advice.

 

I started with mild ME, and went undiagnosed for perhaps decades. I kept pushing myself, exercising, and never came to an understanding of my problems. Excessive activity, plus a possible enterovirus infection in '85, led to my getting worse and worse, in stages. I was first diagnosed under the Holmes CFS definition in '89.

This false illness belief thing is a myth. Its never been scientifically validated, instead its an assumption. All the studies based on this are either inconclusive or failed, but keep being touted as successes by those with a vested professional interest ... and big insurance., and budget slashers in government.

 

It seems that Goldberg was Professor of Psychiatry at the Withington Hospital, Manchester.

 

Well that's been a very interesting day. All I can say is that they are experts at laying down the tracks and letting everyone else come to their own conclusions.
They themselves tread a very cautious path and are very careful NOT to say that "being in support groups leads to a poor outcome". If the occasional person messes up and says something "controversial", they get sidelined. I'd never really appreciated what good politicians these people are... Hmmmm.

 

I have difficulty in understanding this comment by Wessely and Powell:

The role of infection in the pathogenesis of chronic fatigue remains obscure. Certainly the majority of CFS patients felt their illness had commenced with a virus (54% were members of the ME Association).

J Neurol Neurosurg Psychiatry. 1989 Aug; 52(8): 940–948.

PMCID: PMC1031831
Fatigue syndromes: a comparison of chronic "postviral" fatigue with neuromuscular and affective disorders.
S Wessely and R Powell


Wessely is generally too good a writer to allow this apparent non-sequitur. It is almost as if the question of membership of the MEA was exercising his mind at that early stage.

 

I should mention that Healthwise lists no warnings about Multiple Sclerosis support groups, Fibromyalgia support groups, or Parkinson's support groups.

Only ME/CFS has a warning list of support group types to avoid and that certain types of groups can cause harm.

 

I was just thinking this. They tend to make a lot of insinuations and lead readers/listeners up to the brink of the desired conclusion. But they leave the last step so that readers/listeners are likely to come to the desired conclusion, but feel as if they've come up with it themselves rather than having it thrust upon them - helping to bypass critical thinking.

Even with the lightning process: the "we really didn't think it was going to work but it seems like it really did help" line appears to have worked by giving other scientists an out from their pretty obvious duty to roundly roast such inanity.

On the other hand, wesseley wrote pretty transparently in the past so it's not too hard to show what he really thinks and what ideas drive the research.

 

Same here through my mild years. It wasn't until severe ME onset and PEM so severe that I finally was able to work out that it was ME and that took another 10 months after severe onset. I had been trying to carry on as normal through my mild years but getting sicker and sicker.

 

You two are incredible!

Same. Of course, I also started to improve after connecting with patients because some of the advice was quite good; and because, on finding studies discussed on PR by clever people, I became more informed.

Actually, I'd like to see if you could correlate improvement with joining a support group. I just wonder if we're better off than those who have sought 'expert' medical care alone.

 

This... implies that being part of the ME Association renders you susceptible to viral infection.

A breakthrough!

 

Further, belonging to ME Association in the future implies susceptibility to viral infection in the past. This is a quantum mechanical effect, and so perhaps we need more quantum physicists working on solving ME/CFS.

 

Again, my assertion is they indulge in persuasive rhetoric, not evidence and reason. Its about a particular medical subculture. Psychiatry in particular is loaded with associations being commented on over and over until the common understanding is its causation not association.

It would be equally valid to say that using psychiatric methods, especially including CBT, may worsen patient outcomes. I think we have even better evidence of that than they do of using self help groups causing worse outcomes.