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

Please add physical mutilation and mass deaths. Psychiatry is the most appalling of all medical branches when viewed across history. Physical removal of teeth and gut to treat supposed psychiatric issues, chemical and physical constraints, and lobotomies ... all based on unproven theory. We like to think things are changed, but its mostly only in degree. I do think there is some good psychiatry, but you have to look hard to see it.

 

Not that I am aware of. I met older people when I was in London who had ME but the first society that I ever heard of was the ME association. Their web page says they started in 1976. There may have been an informal group based around the north London and Royal Free outbreaks but if it went any further i don't know.

 

Wouldn't mentioning that, somewhere, rather undermine SWs argument that ME is only classified as neurological because of ME lobby groups.

I mean he seems to assert it a lot, at least I seem to be reading about it a lot these days, I can't believe that no one, ever, has pointed out that, at least for the sane, time runs in only one direction, and so lobby groups that didn't exist until several years later couldn't have lobbied on this issue, let alone successfully, and thus the only logical conclusions are that either he's talking total rubbish, or his pants are on fire.

 

I think there may be a misunderstanding. I failed to make it clear that the correspondence concerned potential recognition by the DWP in 1993. SW and PW proffered apparently unsolicited advice upon the subject, so this was all at about the same time as the issues relating to patient support groups.

 

I've probably got ahold of a 3 ended stick, but I'm not sure that's relevant. Either ME is recognised as neurological, or it isn't. Due to the way time operates this recognition was not forced by patient lobby groups. He is, or seems to me to be, saying that ME is classified as neurological because of patient lobby groups.

In any event this is wrong. The DWP is supposed to follow WHO classifications, the WHO decided it was neurological before there were any patient lobby groups, not that they would listen to any anyway.

So it's wrong, he knows it's wrong, but it doesn't suit his narrative.

Apologies if I have the wrong end of the stick, this seems a simple, cut and dried issue to me, but that is normally where I make the most mistakes.

 

He could be referring to attempts to change this since 1969 maybe?

"Issues have arisen with the classification of the term “CFS” in the U.K as well. The U.K.’s WHO Collaborating Centre, at Kings College in London, categorized CFS as a mental illness equivalent to neurasthenia in the 2001 U.K. specific “WHO Guide to Mental Health in Primary Care.”231 As a result, a number of authors and even textbooks have stated that CFS is classified as both a neurological and psychiatric illness, or else state it is only classified as a psychiatric illness.232 In 2001 and again in 2004, the World Health Organization ruled that this classification was incorrect. 233 But this view has been remarkably persistent in other sources in the U.K even today.234 For instance, both the READ codes, used in clinical care,235 and the 2014 U.K Department for Work and Pensions (DWP) guidelines for disability analysts236 classify CFS as both a neurological disease and as neurasthenia. The DWP guidelines incorrectly state that ICD-10 classifies CFS as neurasthenia"

http://www.wakeupcallbeweging.be/pdf/30yearsdisdainsummary.pdf

 

Its always been this one. Our lobby groups are only now attaining some political influence, and its still slow and in the early days. They will however get better. When we really have lobby groups that have teeth then people making stupid decisions and claims based upon stupid data and reasoning will be challenged even more. Even then SWs assertion will not be correct. We have objective science to back up many of our claims now, they have ...?

 

Post has just arrived. Seems I've got the copy that Prof Mowbray gave to St Mary's Hospital med school library!

 

OK. I've now had a chance to have a more detailed look at the book: Post-viral fatigue syndrome (Myalgic Encephalomyelitis) - edited by Rachel Jenkins and James Mowbray (Wiley, 1991).

On the whole, support groups, where named, are mentioned favourably. However, this is not always the case throughout the book, as you'll see below.

From the Preface:

From Chapter 20: Management of ME in hospital practice (by Peter Merry):

Chapter 22: Cognitive behavioural management of PVFS (by Simon Wessely, Sue Butler, Trudie Chalder, and Anthony David) alludes to support groups, but doesn't mention them directly, apart from here:

But no mention that being a member of a self-help group would affect outcome. More a case that those who felt that there wasn't "any role at all for psychological factors (rather than believing that psychological factors may play a role, albeit less than physical factors) tended to do worse." Although, interestingly, all 3 patients who did worse than at outcome were said to have mood disorders or major affective disorder.

In Chapter 23: Chronic fatigue states in children (by Harvey Marcovitch), we find this:

It seems a shame that this book seems to have been cleared from Med School libraries. Much of the stuff in the early chapters is still useful, and interesting from a historical perspective. Wessely's chapter struck me as supremely arrogant. Rachel Jenkins (also a psychiatrist) seemed much more even-handed.

[I'm sure @chrisb will let me know if I've missed anything]

 

I think you sum up well what I have seen so far, but I also only received it today, and need to reread. I keep looking for the references which drew Abbey's attention but have not found anything particular. There is a moderation of the tone towards support groups. It is not clear whether the tone varies depending on the interests and views of the editors.

I am struck by how the terms of the debate change from this book, published in 1991 and incorporating the science of the day, to the Postviral Fatigue Syndrome eds Behan, Goldberg and Mowbray published in BMJ in Oct 1991, to the Chronic Fatigue Syndrome book published 1993. In 1991 even the psychiatrists are reasonable. Jenkins is very rational and Wessely seems less extreme than in some papers.

I wholly agree that this material should still be available in libraries, but it is traditional to make sources of alternative and unwanted knowledge unavailable.

Over the last couple of days I made interesting discoveries about Goldberg whose reference to the ME Society I
quoted above. He needs to be watched for. The full paragraph, of which I quoted part above, was:

"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 "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 ME Society, which advocates total rest."

It seems his father was a civil servant in charge of government training centres and industrial retraining units and that he developed his father's interests. He returned to the Maudsley in 1993, was knighted and became a professor emeritus at Kings.
psychology.wikia.com/wiki/David_Goldberg

It would be interesting to know if he held any advisory roles with government.

 

Re: DoH - I liked this disclaimer...

 

I found his chapter hard to read without feeling very angry and frustrated by what he was proposing. Some things of course may well make sense, but others, like this, are highly prejudicial.

At the end of the section on Attributions (part of A New Model of PVFS), he says:

On its own, it seems harmless, but taken with all the other insinuations throughout the chapter, I found it hard not to take it as a pot-shot at all those actually working in laboratories on the basic science. And how is his 'model' anything other than an explanatory system based on a dubious theory?

 

Spot on @Lucibee @Trish. They just cannot glimpse how their own perception of patients' false beliefs, is in fact much more an issue of their own false beliefs.

 

Just to clarify, @Trish, the words in square brackets are mine, to explain what the "issues" were. The previous paragraphs refered to the tendency of patients to attribute their symptoms to external causes, not that 'orthodox medicine' was making those attributions per se.

 

An update from Healthwise, after I argued that ME/CFS should not have warnings about patient groups causing harm, as other comparable diseases have no such warnings:

This change should then be reflected on the Kaiser Permanente website, as well as other sites that subscribe to Healthwise content.

 

Sometimes the little victories just feel so very rewarding.

 

Apologies that this is rather off topic but it arises from my researches relating to the matter and I hope it will be accepted as a brief aside, as the matter seems important. I never had much regard for the models of ME proposed by Wessely or Sharpe, but thought their reviews of the literature were probably thorough and scholarly. However it seems that either they or I have completely misunderstood an important issue. If it be I, I shall blame age and infirmity. The matter seems worthy of wider attention.

@Lucibee could I prevail upon you to read a section of the Jenkins and Mowbray book and give an interpretation.

In Chronic Fatigue Syndromes by Wessely, Hotopf and Sharpe p129 on the question of hysteria and the LA and Royal Free outbreaks they say:
"Jenkins' conclusion seems the most reasonable "the majority of cases were a hysterical reaction to a small number of poliomyelitis cases amongst the staff"."

I was surprised to see this and checking the original text it seems to be the opposite of Jenkins' view. It is concerning if they are unable to follow the straightforward argument. This phrase appears in Jenkins' Introduction at the top of p14. This appears to be a summary of the views of Acheson and he is merely using it as a strawman to be demolished. The next paragraph commences "Acheson then presented the arguments against the idea that the syndrome constitutes a mass hysterical reaction to a few cases of poliomyelitis". He then embarked upon a four part rebuttal of the hypothesis, which Jenkins clearly supports. My reading is that Jenkins does not consider hysteria significant.

Jenkins makes her views clear at pp28-29.

If I am correct it seems improper to impute to colleagues views which they do not hold. It makes one wonder what can be relied on. Or is it my befuddled brain at fault?

 

I'd need to see the passages in question...