Michael Sharpe skewered by @JohntheJack on Twitter

Esther12 said:
Does that mean there should be no treatment trials for CFS until we can measure the underlying condition?
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Actometers, 2 day CPET, and even work participation statistics come to mind. They had one of those and it failed to show improvement, and one more that they dropped (actometers), and the other predates the start of the PACE trial. Indeed CPET is a 1949 technology, though the repeat protocol was only formalised in 2007.
 
alex3619 said:
Actometers, 2 day CPET, and even work participation statistics come to mind. They had one of those and it failed to show improvement, and one more that they dropped (actometers), and the other predates the start of the PACE trial. Indeed CPET is a 1949 technology, though the repeat protocol was only formalised in 2007.
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They don't measure the underlying condition but the effects of the condition on activity. (Not sure about the CPET one but more validation is probably needed).
 
Adrian said:
They don't measure the underlying condition but the effects of the condition on activity. (Not sure about the CPET one but more validation is probably needed).
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Correct, kind of, but they are still objective measures that can show improvement. CPET does measure a component of the underlying condition with the repeat protocol. In terms of underlying causation we have no tests that are validated because we do not understand the cause.
 
Just to clarify, by "underlying condition", I meant the condition/illness of ME/CFS, and not their made-up perpetuating factors, and not the causes. They did have proxys for the condition, albeit not very good ones. They had employment status, employment days lost; they had the step test, the 6mWT, although those measures are susceptible to cognitive bias if pts are pushed to do well despite their condition.
 
Sharpe's latest excuses from the recent BBC News article about the Parliamentary debate.
Prof Michael Sharpe, one of the study's lead researchers, said: "The trial found that GET can be moderately helpful in reducing fatigue and disability. We also found that it didn't cause harm.

"So the question is why is there a contradiction between the trials and what people are saying? Well it could be because diagnosis is a bit hit and miss, it could be that GET hasn't been done in a careful way.

"More research is needed to find out why there is such a difference."
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https://www.bbc.co.uk/news/health-44568847
 
Lucibee said:
Apart from Tom's studies (below) [which document indirect harm], do we still not have any direct accounts of harm from the trial itself that we can point to?
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See a lot of people on social media saying theyve been harmed by GET I believe a couple Ive seen also said they were in the trial. Dr Myhill's 210 supporting complaints to GMC presumably includes some trial participants but we dont have the info on those individual complaints, maybe Craig Robinson from Dr Ms team would be able to provide more information on that and whether they have any plans to publicise individual experiences of trial participants.
 
Can you believe it? Somewhere there is a department, with a budget, tasked with sorting and evaluating all these claims. Does it remind you of those primary school assemblies attended, when all gain certificates?

EDit a lot has intervened between this and the post which I was responding to which was that about the Platinum Award from ACCEA.
 
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I think it can be argued (by someone smarter than me), that if patient trust is high, they may be unaware of harm. So the ability to say there was no harm is not a statement that can be made with confidence. There may be some first hand documents of harm submitted to Myhill's GMC case against PACE. If so, I wonder if they will be available publicly once details of the GMC case are published.
 
Lucibee said:
Apart from Tom's studies (below) [which document indirect harm], do we still not have any direct accounts of harm from the trial itself that we can point to?

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didn't Carol Monaghan quote from one participant of the PACE trial (re harms)?

eta:
"
One participant in the original trial said:

“After repeatedly being asked how severe...my symptoms were. ..I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough.”

"

mind you there would be one way to find out; do the 5 year follow up and ask
"following participation in the PACE trial did your condition get worse" but ofcourse they would never do it.
 
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Nathalie Wright said:
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I've just looked up the link to the award mentioned here. There are hundreds of awards to doctors, ranging through bronze, silver, gold to platinum at the pinnacle.
Here's the whole of the Michael Sharpe page:
Name: MICHAEL SHARPE GMC/GDC Number: 2673545 Speciality: PSYCHIATRY

My work aims to improve the care of NHS medical patients with comorbid mental illness by integrating psychiatric and medical treatment.

Since 2007 I have further developed a new treatment system for depressed cancer patients (Depression Care for People with Cancer) and I have led 3 major clinical trials which have indicated its effectiveness and cost-effectiveness (publications 2008 - 2014); these have informed NICE guidance and service development in the UK, USA and Australia.

I have played a leading role in the development of cognitive behavioural treatment for the previously untreatable chronic fatigue syndrome (CFS/ME). From 2005 to 2011 I co-led the MRC national PACE trial of treatments for CFS/ME (publications 2011-15). This has shaped NICE guidance and services in the UK and internationally.

I led the design and implementation of a new type of Psychological Medicine service in Oxford University Hospitals in 2012. I now lead the delivery and development of this award winning service in which psychiatrists and psychologists work as members of medical teams to provide fully integrated patient-centred care.

Since 2007 I have developed innovative medical student and nurse teaching. I contribute to 5 leading medical textbooks. I run seminars for clinicians and commissioners locally and nationally and internationally.
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(my bold).

So there we have it - in his own words. PACE was a study of CFS/ME, not CFS as he's now claiming, and it influenced NICE and worldwide guidelines. He can't deny it.
 
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