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

Halp. Looking for a resource on this? I'll start the hunt through Phoenix Rising, but if someone has it handy, I'd really appreciate it.

 

Found, I believe: Collings, A. and Newton, D. What causes chronic fatigue syndrome? BMJ 18 June 2014

A resurrection of White's article of the same name, it has also been called: Is CFS a meme?

Because memes are kewl, that's why.

[Edit: more info here from PR: https://forums.phoenixrising.me/ind...c-fatigue-syndrome-a-meme-18-june-2014.30944/]

 

I am sure that this goes back to 1989 or 1990. I will start looking.

 

"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.

 

This is just somewhat related.

I remember Healthwise having some warnings about "CFS" support groups in the past. Unfortunately, I never thought to save such pages.

Currently, Healthwise encourages support group participation, but has some warnings, including "Some groups may cause more harm than good if they don't have a positive and empowering approach."

https://healthy.kaiserpermanente.or...cyclopedia&ctype=kb&locale=en-us&hwid=hw33387

 

I'd love to know the earlist reference to this too. Was there ever a study that showed correlation which the BPS brigade then used to claim supported their causation beliefs or did it all come straight from their imagination?

 

My memory is that studies of CBT going back to Chalder and Wessely's stuff from the early 1990s looked at the correlation between recovery with treatment and persisting belief in a biological cause but I do not remember support groups being mentioned in that sort of data.

The bit from Wessely quoted by @NelliePledge is so ironic. It seems the 'pessimists' actually understood the nature of the illness recorded in the literature rather better than the authors. It just goes to show how this 'academic discipline' of psychological medicine can be nothing more than propounding popular prejudice dressed up with long words.

 

I'm pretty sure wessely had 2000 or 2001 report to U.K government on CFS and included that comment in it. If you dig through old Wessely papers I'm sure you can find it. AFAI it was support groups, litigation (i.e. disability), believing your illness is biological and 1 more that worsened outcomes.

 

"Sharpe et al (1992) in a prospective study of patients with myalgic encephalomyelitis seen in an infectious diseases clinic find that attributing the causes of ongoing symptomatology to solely physical causes, and participation in an ME support group, are independent predictors of ongoing disability at two-year follow up. The meaning of the latter result is unclear; it may reflect more severely ill people seeking the support of other sufferers, or it may be that the attributions and advice of support groups perpetuates disability.

Sharpe M, Hawton K, Seagroatt V, Pasvol G 1992 Follow up of patients presenting with fatigue to an infectious diseases clinic. Br Med J 305: 147-152."

Somatisation, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome.
Susan E Abbey
1993 Chronic fatigue syndrome. Wiley, Chichester (Ciba Foundation Symposium 173) p238-261 @p243

 

I have a reply for positive thinkers these days, keep your religion to yourself.

 

Also found it here:
"
Self-help groups and patient associations perform a
valuable role in some conditions. This may be true for
ME,22 but membership of an ME group predicts a poor
outcome,16 and those referred to hospital specialists are
more likely to be members than those managed by
primary care.23 It is conceivable (but further studies
would be needed to test) that this association is causal
if, like a religious sect, the group process perpetuates a
non-adaptive set of beliefs and behaviours around ME."

https://academic.oup.com/jpubhealth/article-pdf/18/3/343/4380046/18-3-343.pdf

eta:1996 I think

eta: I think the one that you are looking for was in 1992 by Sharpe
quoted in this book https://books.google.co.uk/books?isbn=0470514396

 

I second that.

 

That figures. I seem to remember there was some discussion about slightly discordant results relating to beliefs between Chalder and Sharpe groups in the mid 1990s - there being differences in beliefs about causal attribution and beliefs about the possibility of improving or some such, when it came to irprovement at follow up.

 

From the Sharpe et al 1992 paper referenced above:
"Follow up of patients presenting with fatigue to an infectious diseases clinic"
Michael Sharpe, Keith Hawton, Valerie Seagroatt, Geoffrey Pasvol, BMJ Vol. 305, 1992

Concluding paragraph:

So were the prospective studies ever done reliably? Or is it just a matter of belief that the causation goes in the direction they prefer?

 

Not that I know of. It seems strange that a hypothesis presented over 20 years ago has not only never been confirmed with reasonable evidence, but is assumed as a fact by some people.

 

Yep!

 

Let alone the hypocrisy.