Michael Sharpe skewered by @JohntheJack on Twitter

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.

Thank you @Keela Too for all your work and @large donner for such a lovely gesture.

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."

 

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.

 

Indeed the 'nice' Michael tweeting is performative. All for show.

 

I already did ask, I was ignored.

 

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.

 

I keep wondering whether "false illness beliefs" started life as one of those derogatory medical acronyms...

 

Given a lot of people conflate the two terms or use them interchangeably, Sharpe is really just clutching at straws.

 

Probably drafting his apology

 

Well if he has the effrontery to show his face again, I'm looking forward to seeing the word "unbecoming" worked into every reply sent to him.

 

The birth of the "unbecoming" meme? I welcome it, for the vexatious activist meme has become stale.

 

https://twitter.com/user/status/1009891690977681413

It was hardly defamation - I don't think anyone said anything re Prof Sharpe that wasn't in line with the evidence.

 

To be fair to Sharpe not all of our problems and the lack of medical research can be blamed on PACE, but PACE and the ideas behind it have been extremely convenient for governments and other insitutions shirking their responsibilities

 

https://twitter.com/user/status/1009867239762419712

https://twitter.com/user/status/1009891971417206785

I think I see now why he keeps telling people to read the paper - he doesn't seem to read things himself before he responds.

 

https://twitter.com/user/status/1009892344068558848

He's thrown down the gauntlet to Carol Monaghan, who is hardly likely to be making it up! (He included CM in his reply).

 

Yes, but PACE was just the distillation of years of Wessely-fuelled ignorance re GET/CBT and unhelpful illness beliefs...