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

Malcolom Hooper Magical Medicine p.236 http://www.meactionuk.org.uk/magical-medicine.htm

"It is not only Professor Pinching who is closely involved with Action for ME: Professor Michael Sharpe is (or was) an ad hoc Medical Advisor to the charity, and on 22nd January 2004 in a debate on ME/CFS in the House of Lords, the Health Minister, Lord Warner, confirmed that Professor Wessely had worked closely with Action for ME, to which the Countess of Mar responded: “Such is that man’s influence that when faced with ME patients, clinicians now collude with each other to ensure that patients receive no investigation, support, treatment, benefits or care – in fact, nothing at all. Patients are effectively abandoned. They have been badly let down by Action for ME. It is now supporting the Wessely ‘management’ programme and is, I see, to be actively involved in the development of the new treatment centres” (Hansard: Lords: 22nd January 2004:656:27:1180)."

(https://hansard.parliament.uk/Lords...3b-82aa-e28b91b5bed9/MyalgicEncephalomyelitis}

 

A local doctor gave a talk in the late 80s and he was quite clear. Patients who joined support groups had a worse outcome and were sicker than patients who did not. QED

 

That's interesting. While not digging in deep (I had promised myself to keep a weekend), I thought that the first UK group who blatantly associated membership of a patient organisation with actual worse disability on paper were Sharpe et al., and that was published in 1992 (at press July 1991)*. Before it was already speculated by them that patients organisations were a "maintaining factor" (implying that b/c they wrote and talked about ME like an illness, including possible viral aetiology, they were contributing to patients not getting well again), but saying that they are causing worse outcome and more sickness is a next step.

I take it from the context that the local doc didn't mean that it was thought that people who joined ME support groups were sicker than patients who did not as a logical, natural occurence? (As they were in more need of support.) Because on itself the statement can be considered true, the problem lies in drawing the skewed conclusion from it that it means the support groups play a role in causing the worse outcome and sickness.

Possible explanations:

- The doctor was present at a talk/conversation/meeting with Sharpe or Wessely or associates of them (Sharpe started assessing patients in 1989 which led to that published association) where they expressed such notions.
- He arrived at such an extreme notion by himself.
- I missed a published source that he had read.



*Edited to add: In the paper Sharpe et al., next to musing that it could be a maintaining factor, concede that the association could also be an understandeable consequence of more disabling illness.
He was specifically asked about it by the ME Association:

"Aside from the fact that the study did not focus on myalgic encephalomyelitis, or on the work the ME Association does, Sharpe reassured us that there was no evidence of a causal relation between membership of a patient group and level of disability." (BMJ Sept '92)

 

It may have been 1992, I was judging the date because I thought it was earlier than that I stopped begin able to go to lectures but memory is faulty 1992 I got my first wheelchair so I might have got there because of that.

He was quoting Wessely and his clique and I had already heard it said. Later it was said that ME was caused because people spoke about it so other people thought they had it too. This was slightly changed to the idea that it was "fashionable" so people claimed to have it.

The way I first saw it was that questionnaires found that people who were members of a group were sicker so to stop being so sick do not join a group.

At the lecture I asked the doctor if the same did not apply to people with heart disease, say, and he floundered and said heart disease was a serious disease then realised the audience was not happy him! His pet theory was actually that prozac would help because it would increase REM sleep but that went nowhere.

 

It was another possible explanation I had (it was a while ago, and those years closely together), but I was afraid you'd think me rude if I said it out loud.

Thanks for your reply and additional information.


Wessely's first writing about ME is in the frame of it being mass hysteria, and his PVFS "treatment" advice follows hysteria presumptions. He might not have put a spotlight on it for a while after that first publication, (although it is often suggested), but for him the assumption that ME was caused by other people talking about it has been there from the earliest beginnings.

In the earliest days they blamed doctors for that a lot. The attitude was that ME was "fashionable" among doctors, who "believed" the patients were suffering from physical illness that wasn't there.

Of course the dr had no answer to your question and dropped the mask for a bit, as you hit him right in the wrapper around the actual psychiatric core: So far I've not come across any doubt or discussion among the ideologists about wheter what they were presuming was accurate, but I have seen a lot of discussion and musing on the problem they came across trying to treat ME patients with psychiatry: how to treat patients that you insist to have psychiatric problems with a psychiatric treatment without letting the patient know both those things because then they would get mad or not cooperate.
(Solutions are things like insisting you take physical symptoms seriously -even though you 'know' they stem from neurosis, manipulating patients into believing it is part of physical treatment by e.g. involving a physician and seeing the patient at a medical ward, building a report with the patient, introducing the CBT as an "experiment" without any so-called judgement wheter ME is physical or psychiatric, etc.)

 

It's taken a while, but I've finally managed to get hold of an article that was cited in relation to self-help groups by Dr Darrell Ho-Yen.

To recap, it was in reference to a post by @Sly Saint here: https://www.s4me.info/threads/who-w...groups-leads-to-poor-outcome.5109/#post-92013

I checked out the references mentioned:

Ref 16 is a misquote - I think Sutton meant to quote Sharpe's 1992 study, that we've mentioned before, because that's the only one that actually looked at the association.

I was intrigued by the Ho-Yen Grant reference (here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/?page=1), because it referred to a study he did with the Moray Firth ME Support Group. I thought that following the reference cited to GP magazine would reveal much more details about the paper he mentioned.

Anyway, this week, I managed to get hold of it, thanks to the kind person at the Royal Free 1955 twitter account who was visiting the British Library.

However, on receiving it, it was disappointing to find that actually, the main results of the questionnaire survey he did was in the BMJ letter, and although there was a little more info in the GP Magazine article, it didn't really provide a full write up of the study itself. [Although, over the next few days, I'm going to put together a compilation of Ho-Yen's BMJ letter and the GP Mag article to give a broader picture.]

It's also disappointing that the only other place that Ho-Yen's article is mentioned is in disparaging terms by Williams and Hooper as an example of poor press about ME. This is simply because of the headline that the subs at GP magazine gave it: "GPs despise the ME generation", and not because of the content, which is a great shame.

But there was one thing. Ho-Yen cites another BMJ article on self-help groups by Stephen Lock, who was editor of BMJ at the time (Lock S. Self help groups: the fourth estate in medicine? BMJ 1986; 293: 1596-1600 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1351868/). So I looked it up this morning, and I think those of you who have been following this ( @chrisb @Arvo @Sly Saint ) might be interested in the perspective it gives, particularly the results of Lock's own survey.

 

Sorry it's taken me so long, but the blog post about it is now up: https://lucibee.wordpress.com/2022/10/14/do-gps-despise-the-me-generation-or-why-headlines-matter/

 

Further to this post about Darrel Ho-Yen's GP Magazine article about support groups, I've also looked back at his interaction with Wessely et al. here: https://lucibee.wordpress.com/2022/11/18/muddying-the-waters/

One of these days, I might actually get round to writing one about support groups - which is what I intended all along!

 

Fabulous blog @Lucibee - thank you

 

Interesting, thanks.

 

Yes, indeed good to have this documented. Thank you for puzzling it together!

Lol, I know what that's like! I still really want to write my analysis about the similarities between the actions of the tobacco and oil companies to create ignorance and keep a set-up controverse going and the actions of our crocodile friends, but I keep getting sidetracked because I'm finding things that I think should be written down first.