Michael Sharpe skewered by @JohntheJack on Twitter

@Pechius that is a good point and many people are unaware that this is part of a much bigger picture.

If you have a search within the forum there are a few threads that discuss or refer to:MUS=Medically Unexplained Symptoms, FSS=Functional Somatic Syndromes, PPS=Persistent Physical Symptoms, BDD= Body Distress Disorder, BDS= Body Distress Syndrome.


There are sinister changes that have been afoot for quite some time now within the UK to lump those with as yet undiagnosed, complex, or conditions where the aetiology is poorly understood. Bad news for everyone and happening at a time when some GPs are allegedly offered financial incentives not to refer patients to specialist services.

I believe this is something David Tuller is looking to address in the coming year.
 
Daisybell said:
If MS believes his ‘job is to write clear papers’ then he must have sleepless nights over PACE.... are there many papers less clear?
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I agree, he should do. But I don't really imagine MS having sleepless nights on matters of integrity. If personal injury lawyers or the like take a stronger interest in PACE, then he might be more prone to sleepless nights. Although part of me cannot help a gleeful thought on that score, I'd be much more interested in PwME finally being treated right - medically and socially. Hopefully we are getting there.
 
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Pechius said:
What do all of you think about the idea of shifting the focus more to broader issues like e.g. framing unexplained symptoms as psychiatric, instead of just ME? I see that some folks from UK are so inundated in the PACE issues that they seem to loose the bigger picture. Almost like the PACE and ME is the only problem, and it's just not true. There are many other syndromes being put in that basket, POTS, IBS, EDS, mast cells, etc etc... the list is too long, and some of these syndromes already have a well established mechanisms. I think it would be uselful to somehow show to the public that actually all of these syndromes have very little to do with psych issues and that things like somatoform disorders probably don't even exist(although most doctors are very afraid to say that) or are so rare that it's irrelevant.
Pwme, seem to have quite unique knowledge and insight into political and other issues among all these communites that could prove very useful to many patients.
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So @Carolyn Wilshire wrote a paper reviewing the evidence in a more general space of psychogenic explanations for physical symptoms. People here are very concerned about MUS (medically unexplained symptoms) which is becoming a wrapper for such psychiatric claims on other diseases. But with MUS when you look at the evidence base they do end up quoting things like the PACE trial (or the results even if not explicitly the trial!). It is a big trial within this area and compared to many trials had a good methodology (for example sufficient numbers of patients). So it is an important one to analyse and understand the methodological issues within the wider context.
 
Daisybell said:
If MS believes his ‘job is to write clear papers’ then he must have sleepless nights over PACE.... are there many papers less clear?
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Yes. Also he and others went on a world wide road trip promoting the over exaggerated claims from the PACE trial and collected many statements from other eminent people singing the praises of the conclusions.

He has had ample opportunity to say "my job is just to write clear papers" over the last few years but he has chosen instead to go around the world promoting falsehoods.

If he is now saying that PACE is not refering to NICE ME definition he cant use Cochrane reports as supporting evidence for ME treatments.


Second I strongly suspect that under the ME/CFS label are a range of different conditions.
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One would think he could have publicly stated that before taking 5 million quid from the public purse and deliberately electing a cohort they suspected would get the most benefit from their treatments. Even that didn't work in terms of proving efficacy in the specially selected cohort so they just changed the endpoints to get more favourable results.

I really think his admissions will help us with the upcoming NICE review.

Note book material? @Jonathan Edwards
 
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Cheshire said:
Well, that is an admission...



I'm just wondering why then he ever tried to push a one size fits all kind of treatment, and dissmissed conflicting voices, why he never ever tried to identify the subgroup that had "good" outcomes with his therapy.
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I sense a degree of wriggling going on. From his point of view I would have thought it incredibly unwise to engage in such activity publicly, I would have thought any kind of legal advice would advise him to keep schtum. He may be layering his own undoings.
 
Snow Leopard said:
Notice how he doesn't answer any difficult questions about his choices or conduct?
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Yep, it's just like the official PACE FAQs he and his colleagues put together. If the questions are easy or innocuous then they get validated with an answer, but if answering would look bad then it gets labeled as a loaded question or something similar. It's a public relations exercise.
 
There is absolutely no doubt about the fact, that in the study CBT or GET had been not beneficial.

I definitely don’t like the direction the twitter discussion took.
There was a mixture of different patients types, but in PACE actually CBT or GET was not even helpful for any kind of cronic fatigue.
 
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