Michael Sharpe skewered by @JohntheJack on Twitter

Maybe what Dr Sharpe has to realise is this. The only realistic way forward for care in ME in the UK is going to be to make use of people already employed to do that and to recruit new people who will have to be trained by those already involved. Until the penny drops with all these people that there is no basis for using CBT or GET or managing on the basis that the condition is psychosomatic we are stuck in negativity.

The positive move we can make at present, and it would be a major positive move, is to educate these people sufficiently for them to realise they need to start afresh. It would be very much easier if people like Dr Sharpe took a vanguard role in that, and gave lectures pointing out that the BPS model is groundless and disproven, at least on prima facie consideration. Or at least agree to stand aside. Similarly for Simon Wessely. But without that we are stuck with having to shout from the rooftops that PACE is rubbish in the hope that stick-in-the-mud service providers finally get the message.
 
Lucibee said:
According to Google, the earliest mention I've found so far of "false illness beliefs" is from November 2003 by a certain David Jameson (ahum!).
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I'll see your 2003 citation and raise you this February 19, 2002 citation in The Guardian. It's from a letter to the editor in response to an article of February 7th titled "The Making of a New Disease."

My specialist has recently found several abnormalities in me which he says are typical of ME. I am trying treatment, though no cure is offered. Extensive testing of the kind I have finally had is actively discouraged - "over-medicalisation of the condition", "feeding false illness beliefs" - tut, tut!
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large donner said:
"we don't want faith healing, witchdoctory, GET or CBT any other nonsense treatments as part of healthcare policy and will just sit tight until something that works is on offer so that we are not made worse by a trial partly funded by the DWP".
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Indeed.
What we want is something that is actually 'evidence based'. And when we say 'evidence' we mean high quality, scientifically sound EVIDENCE. That's why we are so "negative" about PACE.... we are simply pointing out that the evidence for what we're being given is rubbish. That is. The Whole. Point!


And until such evidence for a treatment is produced i will be perfectly satisfied with supportive, respectful care. Something about which MS knows very little, clearly - he has shown no respect to the people he is talking to on twitter, i mean really telling @Mike Godwin to read the paper?! - saying he agrees respect is important means nothing.
Respect means believing the patient knows more about themselves than you do. Respect means treating patients as equals. as people who might actually be cleverer than you, as people who might have something to teach you, not as an aberrence but as a run of the mill occurrence.
From what i've seen 'respect' in the context of psychiatry seems to usually mean something akin to pity. Patting people on the head like you do with a 4 yr old who thinks there are monsters under the bead, & attempting to cut down to size anyone who offers a challenge to their opinions/ideas/work.
 
It might go back to here (1998), though the word "false" is not used. I can only see the abstract.


J Psychosom Res. 1998 Jul;45(1):77-83.
Illness beliefs and treatment outcome in chronic fatigue syndrome.
Deale A1, Chalder T, Wessely S.
Author information

Abstract
Longitudinal studies have shown that physical illness attributions are associated with poor prognosis in chronic fatigue syndrome (CFS). Speculation exists over whether such attributions influence treatment outcome. This study reports the effect of illness beliefs on outcome in a randomized controlled trial of cognitive-behavior therapy versus relaxation. Causal attributions and beliefs about exercise, activity, and rest were recorded before and after treatment in 60 CFS patients recruited to the trial. Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group. Beliefs about avoidance of exercise and activity changed in the cognitive behavior therapy group, but not in the control group. This change was associated with improved outcome. These findings suggest that physical illness attributions are less important in determining outcome (at least in treatment studies) than has been previously thought. In this study, good outcome is associated with change in avoidance behavior, and related beliefs, rather than causal attributions.
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ETA: RE: "than has been previously thought..."
The above assertion that causal beliefs do not affect outcomes (as opposed to beliefs about exercise/activity) runs contrary to a LOT of prior research that was published by psychiatrists/psychologists - including SW - in the early 90's (as documented here by @Valentijn).
 
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I don’t know. I feel like being on point with word usage is actually quite important. Were the shoe on the other foot, I’m sure if we as a patient community were accused of using certain words, the first thing we’d do would be “show me the evidence we said that”.

I just feel it’s important not to give the opportunity to be tripped up on such simple things as words that they didn’t actually use. There’s plenty of stuff that they did use that’s harmful and in plain sight.
 
Barry said:
"So here is a challenge for ME activism:
Can you articulate what treatment you want as opposed to what you don't want?"
Not yet, because funding has been diverted away from good biomedical research.

"Can you offer a positive vision for care as opposed to negativity about previous research?"
Pacing primarily, and

Do I detect a reduction in arrogance and sarcasm?
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i think it is PR - if he's fishing for angry responses he wants his own tweets to be perceived as rational/concerned - so he can use the thread if he gets any nuggets of militancy
 
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Lucibee said:
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In this letter to the BMJ, Wessely is quoted as saying in 1994, "There is also a
phenomenon known as myalgic encephalomyelitis - or ME. This is not open to
simple definition - ICD 10 now discourages its use for that reason -
Instead, I will argue that ME is simply a belief, the belief that one has
an illness called ME."
[My Bold]

https://www.bmj.com/rapid-response/2011/10/30/re-epidemiology-chronic-fatigue-syndrome

If that is not another way of saying "false illness belief", then what is? The exact term is not the issue, the meaning behind the term is the issue - and I don't think you could put a cigarette paper between them. SW said this in 1994 - I don't think DT was on the ME scene then. MS messing with linguistics yet again.

Edit: Added link I originally overlooked.
 
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