David Tuller: Trial By Error: HRA Report Does Not Vindicate PACE

large donner said:
I see, so who briefed them then?
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QMUL, the PACE lot... I expect that there could have been a few quiet words from other interested parties. That they seem to have used some very similar wording to what was seen on PACE 'FAQ's doesn't encourage faith in their truly independent frame of mind, but it's still worth avoiding claiming that the letter was written by people within the BPS crowd when that probably isn't literally true and could be used to frame criticism of HRA's work as unreasonable.
 
Esther12 said:
QMUL, the PACE lot... I expect that there could have been a few quiet words from other interested parties. That they seem to have used some very similar wording to what was seen on PACE 'FAQ's doesn't encourage faith in their truly independent frame of mind, but it's still worth avoiding claiming that the letter was written by people within the BPS crowd when that probably isn't literally true and could be used to frame criticism of HRA's work as unreasonable.
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Why are you claiming it then. :sneaky:
 
large donner said:
Oh ghee thanks for babysitting me Esther.
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Did you mind? #sorry if it seemed patronising. I like to be babysat! If I didn't have people pointing out problems with what I posted I'd be in a much worse place today. I assume people here are generally trying to pull together in the same direction.
 
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large donner said:
In that case I'll take this opportunity to tell you to stop panicking over the things people say in their posts.
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I've just been reading an ICO decision notice that used some defensible but strong criticism on a forum to help justify a refusal to release PACE info (a comment I made about a tribunal ruling has also been used against other patients). Easy to find examples of academics using patients expressing justified frustration as reason to avoid criticising PACE. I'm not saying your comment was some disaster, but I think it's worth encouraging a culture where we are all trying to remind each other that letting off a bit of steam here can end up causing problems elsewhere. We're having to deal with a lot of frustrating stuff, and it's easy to forget how our irritation/cynicism/distrust can lead to problems if it's not carefully phrased and explained.

We shouldn't have to worry about things like this, but I keep finding examples of reasons why we do!
 
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Snow Leopard said:
He ran one of the clinics where the interventions were carried out, he wasn't directly involved with the design or organisation of the trial, though I'm sure he was asked for advice...
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From some old notes about Wessely's role in it PACE:

The PACE trial identifier says: "(S)taff at the Clinical Trials Unit (CTU) [...] will be primarily responsible for randomisation and database design and management [...], directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU."

The trial protocol says: “The authors thank Professors Tom Meade, Anthony Pinching and Simon Wessely for advice about design and execution.”

The acknowledgements of the 2011 PACE paper says: “Simon Wessely commented on an early draft of the report.” And: "We thank the participants who took part in the PACE trial, staff from all the centres (including all PACE [...] specialist medical care doctors: [...] Simon Wessely."

So, as far as a formal connection to PACE goes, Wessely was one of two people "primarily responsible for randomisation and database design and management"; gave "advice about design and execution"; "commented on an early draft of the report"; and was one of the specialist medical care doctors during the trial (i.e. administered one of the trial's interventions).

Furthermore, Wessely has indisputably been one of the main architects and advocates for the hypothesis underlying the cognitive-behavioural model of ME/CFS, and the two 'treatments' based on it (CBT & GET). PACE was the big test of his baby, his big original contribution to medicine, the thing upon which he built the foundation for his career and empire.

Wessely also has close and long standing professional and ideological ties to the PACE primary investigators, and personal ones as well (as he has noted), and over the years has had an influential role in just about every governing institution, professional organisation, and advisory body of significant relevance to ME/CFS in the United Kingdom, and many international ones too.

Wessely is up to his neck in PACE, however you slice it. The distinction between formal and informal roles is a relatively minor one in this case.

References:

PACE trial identifier
http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-10-114

PACE trial protocol 2007
http://www.biomedcentral.com/1471-2377/7/6

Main PACE paper (Lancet 2011)
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

PACE Statistical Analysis plan (2013)
http://www.trialsjournal.com/content/14/1/386
 
A review of the reception of the study shows indications that the science is sound, as well as evidence of concern.
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Somehow, "evidence" sounds considerably more convincing than "indications."

When asking my doctor if a medical procedure is safe, I'm not sure that I'd want to hear him say that "there are indications that the science is sound."
 
Suffolkres said:
Sent: Saturday, May 15, 2004 7:01 PM
Subject: [CO-CURE] ACT: The PACE and FINE trials: correcting some misunderstandings

"From Dr. Peter D. White:

The PACE and FINE trials: correcting some misunderstandings
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Dear @Suffolkres, do you have an original or reference of this text?
 
Sean said:
From some old notes about Wessely's role in it PACE:

The PACE trial identifier says: "(S)taff at the Clinical Trials Unit (CTU) [...] will be primarily responsible for randomisation and database design and management [...], directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU."
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Yes, as I said, he was the director of the clinic (and Clinical Trials Unit), but didn't do the database design/management himself.

The bit you left out of the quote is the person responsible for randomisation, database design and management (Dr Tony Johnson).
 
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