Michael Sharpe skewered by @JohntheJack on Twitter

A strong positive message will be more easily heard I think.'
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The thing is: ME sufferers (and their supporters) are sending a strong positive message. The message is of courage in the face of adversity and persistently trying to get better treatment while being very ill and often maligned.

Keela Too said:
Many thanks also to a @large donner who kindly sent me an Amazon voucher as a thankyou for doing this - it was not required, but the thought was greatly appreciated.
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Thank you @Keela Too for all your work and @large donner for such a lovely gesture.

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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So at least he got the first part of the name right ;)
 
I should say that I'm pretty sure I've used the phrase "false illness beliefs" at some point but NOT as a direct quote from the PACE authors. I have used it as an objective description of the theory they have promulgated. It is clear from everything they have written that the theory at its core posits the absence of an organic disorder. When I have quoted them directly, I have often used the word "unhelpful," since that is the word used in PACE. But the reason the beliefs are "unhelpful" is because they are presumed to be false; in this case, if they were true, they wouldn't be unhelpful. So I can easily defend the argument that the phrase "false illness beliefs" is an accurate description of their theory even if they themselves have never used the word "false."
 
dave30th said:
But the reason the beliefs are "unhelpful" is because they are presumed to be false; in this case, if they were true, they wouldn't be unhelpful.
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But then we have this sort of 'pragmatism' from Wessely and co:

"the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful." http://www.simonwessely.com/Downloads/Publications/CFS/85.pdf

They do occasionally make references to the possibility of an unidentified organic disorder too.

Also, I think that some of them can see themselves as scientists following the evidence, with rigorously conducted research (*cough*) showing that certain beliefs are 'unhelpful', even though the matter of whether they are 'true' or not has yet to be settled. In the same way they can argue that GET is a useful treatment for CFS, even though the model of CFS which assumes the deconditioning plays an important role in the perpetuation of CFS seems to be false. They present themselves as being in the business of rehabilitation, focussing on outcomes, not obsessing over unknowable issues of causation.

A problem with all this is that they're not very good at conducting research, and so their pragmatism is misdirected. One of the problems with pragmatism is that it's often very difficult to measure the outcomes that people most value, and those who have the power to decide what outcomes are measured can choose those which serve their own interests.
 
chrisb said:
Sharpe says that PACE was about CFS not ME. That is fair enough. It was CFS that was in the title.

It was Sharpe who wrote up the criteria for CFS. If anyone knows the intended relationship of ME to CFS, he should. Perhaps someone on Twitter could enquire of him, and ask him why this was not made clear in the paper. I have read that paper.
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I already did ask, I was ignored.
 
chrisb said:
Sharpe says that PACE was about CFS not ME. That is fair enough. It was CFS that was in the title.
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It was "chronic fatigue syndrome" in the title because that's Lancet policy. ME was disappeared in the 90s, I presume after Wessely had words with The Lancet over their editorial on the RCP report in 1996. We weren't allowed to use the term "ME" in editorial when I was there, and I suspect that's still the case (although at a push they'll stretch to CFS/ME if they have to).

I asked Sharpe why they didn't exclude patients with ME if it was about CFS and not ME. I haven't had an answer. But he'll probably just mention the sensitivity analysis again if he does.
 
dave30th said:
I should say that I'm pretty sure I've used the phrase "false illness beliefs" at some point but NOT as a direct quote from the PACE authors. I have used it as an objective description of the theory they have promulgated. It is clear from everything they have written that the theory at its core posits the absence of an organic disorder. When I have quoted them directly, I have often used the word "unhelpful," since that is the word used in PACE. But the reason the beliefs are "unhelpful" is because they are presumed to be false; in this case, if they were true, they wouldn't be unhelpful. So I can easily defend the argument that the phrase "false illness beliefs" is an accurate description of their theory even if they themselves have never used the word "false."
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I keep wondering whether "false illness beliefs" started life as one of those derogatory medical acronyms...
 
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