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

Yes @JaimeS ....madness.

I think their implied rationalisation was that it was my fault that my illness had become chronic as in their view I was unlikely to engage fully in the "optimal treatment" of CBT/GET.

 

Once CBT and GET are well and truly discredited, we have to think more clearly about how we got here. CBT and GET aren't primary treatments in the US, but we're still dismissed and disbelieved, here. Medicine the world over blames sick people for having the audacity to be sick.

 

People tend to find it difficult to bear looking at disability and react by denying the severity of the problem.

 

In 1990, I was told by a consultant that the only way to prove that I'd been ill was to get better!

 

That's a fascinating bit of doublethink.

ME is totally curable of course, so the only way you'd ever prove you'd had it was to get better? It boggles the mind.

 

Wow, that is so obviously stupid (in the sense of unintelligent) that it hurts. Difficult to further engage with such people...and in an earnest manner also.

 

If there is a single post on this entire board that needs to be the basis for an honest debate in the entire western society, it is this one.

 

I said it before, but: Catch-22 disease is the best possible name, or at least a very apt nickname.

No matter what you do, you're fucked. If you do much more than you should, you're even more fucked. If you do much less than you should, you're even more fucked.

If you don't get better, it's proof you're lying. If you do get better, it's proof you were lying. If you do the treatment and it works, you were clearly making it up. If you do the treatment and it doesn't work, clearly you are lying since the treatment works.

Alternatively I like Murphy's disease, because everything bad that could have happened did happen in exactly the worst possible way.

Hanlon's disease isn't bad either. Is it malice? Is it incompetence? Yes. Yes it absolutely is. Wait, which one is yes? Exactly. It's definitely malicious incompetence.

 

I've called it Heisenberg's Uncertainty Syndrome in the other forum, I think. But I like Hanlon's Disease better.

There's a phrase that means exactly this:

"Hanlon's razor isn't very sharp."

It means that malice and stupidity aren't mutually exclusive.

 

Don't know if this is mentioned yet, but I was just reading some of the GET trials and one of them (Powell et al. 2001) did a mediation analysis where they found that membership of a self-help group predicted poor outcomes. The paper (Bentall et al. 2002. Predictors of response to treatment for chronic fatigue syndrome) discusses this result into more dept in an attempt to make sense of it:

"Mechanic (1986) reported that interest groups who adhere to particular theories of illness may play a part in reinforcing illness beliefs. In the presence of such a group, a personal problem becomes a shared social problem. Although there are undoubted problem. Although there are undoubted psychological benefits from this kind of support (McCully support (McCully et al , 1996), there have been reports that the advice dispensed by some CFS groups may have a negative effect on recovery, for example by advocating the avoidance of activity (Abbey, 1993; Surawy et al , 1995). It may be counterproductive to discourage patients from joining such groups, however; instead, clinicians and researchers should forge constructive alliances with support groups, to ensure that patients receive advice that is consistent and evidence-based." ​

Suggestion: maybe the creater of threads like these that search for particular papers, could update the main studies in the first post so everyone gets a clear overview of what has been found thus far?

In this case I think we allready had:

Sharpe et al. 1992 Follow up of patients presenting with fatigue to an infectious diseases clinic.

Friedberg et al. 2005 Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members.

 

This one is widely used by the psychosomatics in Norway, when they want to point out that there is a harmful “ME society” on net
https://www.researchgate.net/public...phalomyelitis_in_a_Virtual_Symbolic_Community

 

A few of us did quite a bit of research to track down this quote, and managed to get hold of some of the books cited.

These posts outline what I found (with more points in subsequent posts included in those quoted):

https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-3#post-92425
https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-3#post-92469
https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-5#post-93999
https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-6#post-94352
https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-6#post-94501

The Bentall reference that you mentioned Bentall et al (2002), also lists many of those we looked at.

I still haven't managed to get hold of the original MEA leaflet, on which the "excessive rest" claims are laid by Wessely. I suspect it calls for rest in the early stages of the illness, rather than throughout, which would be useful to be able to confirm, as it has been dreadfully misquoted if so.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014351/?page=5

Simon Wessely states enteroviral antigens were associated with poor outcome in CFS. He goes on to say that the antigen is also found in depression and neurological disorders.

 

MEA=ME Action (Campaign).

I'm still trying to track down these pamphlets from 1987/1988. Does anyone know where I might be able to get hold of (copies of) them?
I've asked Action for ME whether they have archives going back that far, but I'm not holding my breath!

 

I vaguely remember Ellen Goudsmit saying what patient groups were advising was being or had been mischaracterised. She was the editor of the ME Action magazine/newsletter in late 80s or early 90s, possibly under a pseudonym.

 

I think I have probably quoted this before, but may be wrong. I usually am.

In the book Chronic Fatigue and its Syndromes 1997 p286 Wessely et al seem to have a number of people in their sights including Ramsey, ME Action Campaign and Colby. They say this

The beneficial effect of rest and the deleterious effect of activity is so much a part of the concept of ME that the person who did the most to advance the case of ME in this country wrote that "if some doctors get beneficial effects after exercise, then their patients are not suffering from ME" (Ramsey More challenges to ME advice General Practitioners weekly briefing 20 January 1989; 27)

What might happen if such advice is not heeded? A self help book tells sufferers that they must only do "seventy five per cent of what you are capable of...unless you want to plummet down with a relapse soon, you really must follow the rule of doing less than you think you can. (Dawes B Downing D Why ME? A Guide to combatting post viral illness 1989) Another frequent theme of the literature is the cost of ignoring such advice. The original fact sheets produced by one of the self help groups for CFS sufferers stated in bold type " For the majority of ME sufferers physical and mental exertion is to be avoided and adequate rest essential. Important: if you have muscle fatigue do not exercise, this could cause a severe relapse" (ME Action Campaign 1989) although it is a pleasure to record that the patients' organisations themselves now regard such stark advice as simplistic. Nevertheless, encouraging children back to school might be harmful, "especially because of the possibility of heart complications (Colby J The school child with ME Br Br J Special Educ 199421: 9-11)...

 

You have quoted it before, but that's OK. That's why I want to find the original sources. (Although, to me, the advice seems entirely sensible, and neither stark nor simplistic.)

 

I think hat previously I did not include the reference to Ramsay. It is significant that the bit of the ME Action Campaign leaflet to which objection was taken is broadly in line with the advice of someone with in excess of thirty years experience in the field. What was Wessely's expeience in, say, 1990? Three years?

EDIT but SW never did like anyone to suggest that some of the patients he was diagnosing were suffering from something different.

 

Not very useful, but when SW made the claim that people were advocating complete rest none of us were able to think of anyplace or anyone who had ever said that. There must have been about 20 of us in the local group at that point and no one had ever felt that complete rest was recommended. It must have been a misreading of something as patients had not taken that meaning out of anything written.

In his book, Dr Ramsay spoke about a typical patient, a fellow doctor from the Royal Free if I remember it correctly, who could work as normal for a few weeks or months but then collapsed again. It makes me wonder if keeping to the advice to rest adequately meant that patients at that time could achieve almost normal lives (even if curtailed in the exercise sense) except when a sudden demand was made on them.

It is a better outcome than most people get under the CBT/GET regime.

 

I have been thinking about this further, and I may have misled anyone who took any notice. It would' of course, have been entirely wrong to refer to the thirty plus years' experience of Royal Free patients and there advisors. Were they not a bunch of hysterics? SW himself had written on the subject in 1987. His co--author Thomas had found their continuing weakness to be volitional and simulated. CFS was entirely different and only known since 1987. (I know. The paper was in 1988, but the meeting was in 1987.) "In contradistinction to some acute outbreaks, there is no reason, in most of the (sporadic) cases, to suspect either abnormal illness behaviour or imitative phenomena," (Wessely and Thomas 1990). As the carol goes "there'll be a new world beginning from today". The Messianic fervour was entirely appropriate.

No wonder the views of the patients' organisations were derided.