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

Webdog said:
Sometimes the little victories just feel so very rewarding. :)
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Brick by brick is how you build a solid house.

Also, it is not always obvious in advance which little victory will yield the most effect and gain the most ground. If we knew in advance, it would be easy (or at least a lot easier).

Just have to keep plugging away at any reasonable leads and possible openings, and see what develops.
 
chrisb said:
@Lucibee could I prevail upon you to read a section of the Jenkins and Mowbray book and give an interpretation.
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I haven't seen the Wessely, Hotopf, Sharpe book, but I agree they have misquoted Jenkins. As you say, she was carefully outlining Acheson's argument, and it needs to be taken in the context of that whole section of the Introduction. That makes me so cross. The number of times that Wessely and Sharpe have called foul when they claim to have been quoted out of context... and yet, here they are, doing the very same thing! Grrrrr....

ETA: There is something very disturbing and unsavoury about this. I'm reminded that during the Twitter convo when Wessely namedropped his friend Mike Godwin, and was trying to claim he had less involvement in PACE than he actually did, he said he had no need to be an author because he already has his name on 800 other publications. He has been systematically flooding the medical literature with his views about ME for 30 years, presumably to try to drown out any real science on the subject. And he has succeeded. They know that if they keep repeating their mantras in the literature, they will eventually be accepted as fact, even if there is little to no evidence behind them.

I was struck by the contrast between the chapters that deal with the virology and the later psychiatric chapters. The early chapters are very cautious. They are written by scientists who don't want to put anything into print until they are certain they have got it right. Wessely's chapter, on the other hand, is bordering on cavalier in its certainty, although he inserts enough circumspection to give it some credibility, but that also makes it quite contradictory in places.

Anyway - I have so much more to say on this, but I need to go away and gather my thoughts.
 
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@Lucibee thanks for that confirmation. This is a serious error. It is a simple construction. If this has been misunderstood by Wessely, Hotopf and Sharpe it shows that there was only a perfunctory reading of the script, or an inability to understand simple English. It is rather surprising in view of the trouble they go to to say the illness is not hysteria.
 
chrisb said:
@Lucibee thanks for that confirmation. This is a serious error. It is a simple construction. If this has been misunderstood by Wessely, Hotopf and Sharpe it shows that there was only a perfunctory reading of the script, or an inability to understand simple English. It is rather surprising in view of the trouble they go to to say the illness is not hysteria.
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I don't think they've misunderstood at all. They're playing games.
 
chrisb said:
I meant simply that the error should be put to them and they should be invited to comment
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Their usual response to that tactic is to say, "Why are you so obsessed with something I said 30 years ago?"

It is relevant to the subject of this thread, because they will always find a way not to say it themselves, but to let others say it for them (whatever the "it" is).
 
Sly Saint said:
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
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I've checked out reference 16 (Wilson et al) - which is this one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539669/ - and it makes no mention of "membership of an ME group" being a predictor of poor outcome - in fact, they didn't seem to measure it at all. So yet another misquoted reference. They do say that, "strong conviction in a physical disease process at initial assessment was associated with poor outcome", but that's not the same thing. I suspect Sutton meant to reference Sharpe's study, but got the wrong ref.

Blatch and Blatt subsequently comment on the Wilson paper as follows (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540179/):
Further, the association of "disease conviction" to lack of improved global outcome at follow up may reflect the fact that patients with severe physical symptoms (for example, inability to walk) attribute their disease to a physical basis more than do patients who experience mild symptoms (for example, headaches and tiredness). In this way disease conviction could be measuring disease severity. The possibility that self rated outcome variables may thus be invalidated suggest that caution is needed in interpretation, which the authors fail to note.
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If anything, it's Lawrie and Pelosi's editorial in the same issue that lays the tracks for blaming support groups: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539646/

A furious exchange of letters thus ensues in the pages of the BMJ (the links above provide further links to those letters).
 
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Sean said:
Brick by brick is how you build a solid house.

Also, it is not always obvious in advance which little victory will yield the most effect and gain the most ground. If we knew in advance, it would be easy (or at least a lot easier).

Just have to keep plugging away at any reasonable leads and possible openings, and see what develops.
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I wish more could see this. Change doesn't happen through a snap of the fingers.

Lucibee said:
They do say that, "strong conviction in a physical disease process at initial assessment was associated with poor outcome", but that's not the same thing. I suspect Sutton meant to reference Sharpe's study, but got the wrong ref.
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This happens surprisingly often in papers. I'm one of those hardliners that often goes back to an original source if I feel the fact or idea seems unusual, and researchers get the wrong citation constantly. I've caught a few of my own errors in this way, I'm no exception. Especially when you're on a deadline you fly through citation -- and it's impossible to tell at a glance that you've made a mistake.
 
I think I may have to stop investigating this matter. It is too damaging to the "mental health".

I have just noted that the preface to the Wessely, Hotopf and Sharpe book states that various people, including Rachel Jenkins, "have all commented on various aspects of the manuscript, particularly in areas unfamiliar to us". They wouldn't have failed to show her the section where they quoted her, would they? In which case must she be considered to have condoned and accepted the quotation, even though it appears to be at odds with what she wrote?

We know, of course, that Wessely and Sharpe do not believe in the hysteria hypothesis. They have often told us. Yet Jenkins, who gives every appearance of not believing in it, apparently does.

My head hurts.

ETA I do not remember where all parties currently stand on the question of "functional illness". In any event Jenkins gives us helpful confirmation of what we knew:

"However, since the McEvedy and Beard papers were published, the standard psychiatric teaching, and indeed often the standard medical teaching, has been that ME is primarily a functional illness, namely hysteria." p25
 
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OK. So, in summary, we have Sharpe's study in BMJ (1992) which claims to show an association between support groups and poor outcome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883193/ (with alternative explanations presented in correspondence by others)

...which in turn references Wessely's study on 50 patients (JNNP 1991): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014351/

...which Wessely also mentions in his chapter in the Jenkins/Mowbray book on Post-viral fatigue syndrome (1991).

Wessely mentions that "At the beginning of 1989 over 150 people a week were joining the principal patients' organisation." and cites David Smith's book "Understanding M.E.", which seems to be positive towards support groups.

Is that a fair summary?
 
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I was beginning to think of analysing this into various parts:

1. Sharpe's association of membership of an organisation and worse outcome, without attribution of cause.

2. Goldberg's saying that following the advice of "the ME society" as to rest causes poorer outcomes and

3.Wessely's general outpourings of vitriol towards organisations in general as stated in his book.

The problem as I see it is the failure by Goldberg and Wessely to distinguish between the good, the bad, and the awful advice which was offered by the various organisations of the time. Lumping is what they do. There was no doubt justifiable ground for criticism of some advice and some organisations-but blanket criticism is absurd.

Unfortunately the dog has developed a greater taste for Wessely's book than I have, and I shall have to retake possession.
 
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Lucibee said:
As Charles Shepherd noted (pdf of correspondence), the alcohol avoidance factor could easily just be a key symptom of the condition that is simply indicative of severity. Association is not causation.
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Clearly, they included the item on alcohol consumption hoping that they could pin any non-recovery on bad behaviours like drinking too much. Inconveniently for them, it had the opposite effect.
 
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