Michael Sharpe skewered by @JohntheJack on Twitter

Trish said:
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:

(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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I imagine he’s going to just ignore this one on twitter. I can’t see how he could wriggle out of it. It’s a direct contradiction to multiple things he’s been saying.
 
Sly Saint said:
didn't Carol Monaghan quote from one participant of the PACE trial (re harms)?
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Lucibee said:
I took that to indicate bias rather than harm per se. And one account is not enough while they're all like "didn't see it. didn't happen."
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Carol Monaghan
I thank the hon. Gentleman for his intervention. It is typical, because the PACE trial had such publicity and was lauded by many as the answer. One participant in the original trial has contacted me:

“I was determined to be a part of the...trial because I wanted to get better—so if this ‘treatment’ could make me better I wanted to give it the chance to do so. I was assigned Graded Exercise Therapy. It never occurred to me that it would actually make me more ill. Nor did it occur to me that decline would not be documented, and that despite patients not recovering (or in some cases worsening), they would publish that the treatment was successful...It was stressed that I would only get better if I tried harder, and even though the graded exercise was clearly making me worse, my struggle and pain was dismissed.”
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This is pretty close to direct, and if that participant was prepared to talk to Carol Monaghan, they might (but their choice of course) be prepared to go directly on the record. But the above is a pretty close second to having that. Also interesting that the above quote includes "and that despite patients not recovering (or in some cases worsening), they would publish that the treatment was successful". That very strongly suggests that other PACE participants were also adversely affected by GET, and that the investigators obfuscated that in some way. Maybe why so much resistance to releasing all the data?

https://hansard.parliament.uk/commo...-4566-940D-249F5026FF73/PACETrialPeopleWithME

Edit: Just realised that is from the Feb debate, but still valid.

Edit 2: "and that the investigators obfuscated that in some way" ... would that be of interest to @dave30th or Steven Lubet? If it could be proven?
 
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Trish said:
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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Oh, that's fantastic. Does CBT help pathological liars, maybe he needs a dose of his own medicine?

He seriously underestimates the ability of pwme to do the detective work to dig up these inconvenient documented truths.
 
Nathalie Wright said:
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"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."
Wasn't he refuting his involvement in the PACE papers and that he was not a centre lead?!!
 
Sbag said:
"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."
Wasn't he refuting his involvement in the PACE papers and that he was not a centre lead?!!
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That was SWessely this is MSharpe
 
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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I haven't read through these so not sure if they would provide anything useful

https://www.dropbox.com/s/kbjmmuc1u...Evidence Based Guidance January 2018.pdf?dl=0
https://emerge.org.au/wp-content/uploads/2018/02/PEM-GET-Primer-December-2017.pdf
http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
 
Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
Author links open overlay panelDominicDougallaAnthonyJohnsonbKimberleyGoldsmithcMichaelSharpedBrianAnguseTrudieChalderfPeterWhiteg

Highlights
•
This study shows the distribution of adverse events in a trial of treatments for CFS.

•
Non-serious adverse events were common, but no different between treatments.

•
Non-serious adverse events were more related to ill health than treatments.

•
Deterioration in physical function was more likely after adaptive pacing therapy.

•
Differences between centres may be related to different ascertainment methods.
Abstract
Objective
Adverse events (AEs) are health related events, reported by participants in clinical trials. We describe AEs in the PACE trial of treatments for chronic fatigue syndrome (CFS) and baseline characteristics associated with them.

Methods
AEs were recorded on three occasions over one year in 641 participants. We compared the numbers and nature of AEs between treatment arms of specialist medical care (SMC) alone, or SMC supplemented by adaptive pacing therapy (APT), cognitive behaviour therapy (CBT) or graded exercise therapy (GET). We examined associations with baseline measures by binary logistic regression analyses, and compared the proportions of participants who deteriorated by clinically important amounts.

Results
Serious adverse events and reactions were infrequent. Non-serious adverse events were common; the median (quartiles) number was 4 (2, 8) per participant, with no significant differences between treatments (P = .47). A greater number of NSAEs were associated with recruitment centre, and baseline physical symptom count, body mass index, and depressive disorder. Physical function deteriorated in 39 (25%) participants after APT, 15 (9%) after CBT, 18 (11%) after GET, and 28 (18%) after SMC (P < .001), with no significant differences in worsening fatigue.

Conclusions
The numbers of adverse events did not differ significantly between trial treatments, but physical deterioration occurred most often after APT. The reporting of non-serious adverse events may reflect the nature of the illness rather than the effect of treatments. Differences between centres suggest that both standardisation of ascertainment methods and training are important when collecting adverse event data.
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https://www.sciencedirect.com/science/article/pii/S0022399914001883
 
And another - left as a comment on Keith Laws blog:

Julie (2 November 2015)
I was on the PACE trial. I was part of the late intake of participants and was in the CBT + APT arm of the trial. I've seen references in other places stating participants only received CBT with GET. This is not true and is an important point.

I walked into the trial with a stick and moderate M.E. still managing to work part time. My course was 6 weeks long, 2hrs a week. I came top of my group for CBT and was told this is how you are treated with ME that by changing your attitude and responses to things you will improve. So I complied.

19th December 2011, 3 days after the end of the course I collapsed from the effort of getting to it. I've been 80% housebound and periodically bedbound in relapses ever since. I cannot comply with anything now.

from http://keithsneuroblog.blogspot.com/2015/11/pace-thoughts-about-holes.html
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This is concerning because the trial was well over by then - so what on earth were they doing still recruiting patients?

[Edit: Thread moved to here]
 
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