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

Adrian said:
My suspicion would be that some people benefit from the base lining they do with CBT/GET and never progress past this. Basically by learning to pace and manage activity a bit better. But people who are active members of support groups have learned these things and hence gain no benefits. I suspect they may have encountered such things early on in small trials where they perhaps personally talked to patients a bit more rather than hiring therapists. But then let their prejudice dictate their interpretation.
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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:
The mainstay of treatment remains rest, and to wait either for remission or a medical cure, and the advice consistently offered by the current self help groups is to avoid physical and mental activity. Others are told to accept disability as "living within their limits". This state of affairs has been succinctly described as "therapeutic nihilism"[8] and is unsatisfactory.
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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.
 
chrisb said:
"Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the "M.E. Society" (sic), which advocates total rest."
Psychiatric Perspectives: An Overview TO Woods DP Goldberg
British Medical Bulletin (1991) Vol 47 No 4 pp 908-918 @p912

No reference is quoted, but I am fairly sure it was used earlier.
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The whole section of that part of the overview is quite revealing:
Abnormal illness behaviour
Eisenberg [11] has suggested that the chronic aftermath of acute infection with influenza represents a pattern of persistent illness behaviour precipitated by a disease episode in a group of psychologically vulnerable individuals. Once sanctioned by a doctor, the symptoms are more likely to persist; the persistence of the symptoms is mistaken for confirmation of the diagnosis. The diagnosis of chronic brucellosis is no longer fashionable, 30 years after its 'discovery' it has become clear that 'it is a spurious disease construct which legitimizes and thereby perpetuates chronic illness behaviour'. He goes on to say that there have been a number of successors such as 'chronic mononucleosis', and would no doubt include PVFS in its various guises. He considers them to be the somatic presentation of personal distress, 'legitimised by a newly fashionable diagnosis'.

It is possible to understand chronic fatigue in terms of chronic abnormal illness behaviour; cognitive and behavioural changes lead to symptom perpetuation. The obvious advantage of such an understanding is that it encompasses the disciplines of both psychiatry and physical medicine by recognising the continual interplay between psychological and organic factors which occur in any illness, and suggests a multi-factorial approach to treatment.

The recognition of PVFS by the Department of Health can be viewed as an attempt to legitimise the sick role, and thus regard the chronic illness behaviour manifested by the patients within the ambit of 'normal' illness behaviour. Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the 'M.E. Society', which advocates total rest.
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The Eisenberg reference is available here: pdf

I wondered whether there was anything in Sharpe's contribution, and found this (again, not explicit):
Patients without a 'physical' disease label for their illness may consequently experience difficulty in explaining their disability to friends, family and employers. Hence they may request a 'physical diagnosis' from doctors. The mishandling of these concerns may cause breakdown in the doctor-patient relationship.[26] The resulting dissatisfaction with conventional medicine may drive the patient to seek dubious therapies and prevent more effective treatment being given.

In response to this lack of acceptance of the 'reality' of the symptoms of CFS, support has been sought for the existence of a disease called myalgic encephalomyelitis or 'ME'. Whilst undoubtedly important in raising public awareness of the sufferer's predicament, the insistence that 'ME' is an exclusively physical disease, untreatable except by rest, and with a poor prognosis, may in the long run have been unhelpful for sufferers. Of greater concern is the possibility that if the psychological hypotheses described above are correct, such a restricted conception of the problem may not only have deprived patients of potentially helpful psychiatric treatment, but may have perpetuated illness in some individuals.
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The ToC for the whole issue is here.
 
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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.
 
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chrisb said:
"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...."
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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.
 
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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.
 
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.
 
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Lucibee said:
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.
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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.
 
alex3619 said:
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.
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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.
 
chrisb said:
I hope to have the book shortly thanks to Amazon's second hand book dealers. I will report back in due course.
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Lucibee said:
Ha! Me too!
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You two are incredible!

strategist said:
Contact with other patients has been good for my mental health, although I was also given bad treatment advice.
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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.
 
Lucibee said:
I'd never really appreciated what good politicians these people are... Hmmmm.
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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.
 
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