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(UK) Bristol talk on April 2 by Peter White: "Lessons from the PACE trial"

Tom Kindlon

Senior Member
Messages
1,734
It would be good if one or more patient advocates could make it to this. I suspect some/many of us would disagree with at least some things he will say.


http://bit.ly/1hsZh3P i.e.

http://www.bristol.ac.uk/social-community-medicine/seminars/2014/121.html


University home > Social and Community Medicine > Seminars > 2014 > School seminar Lessons from the PACE trial: A trial of complex interventions for a complex condition


2 April 2014, 12.45 pm

Canynge Hall, Room LG.08


Speaker:

Professor Peter White


Biography:

Peter White is Professor of Psychological Medicine at Bart’s and the London.

He is interested in conditions that affect both mind and body, particularly the chronic fatigue syndrome (CFS). His early work showed that Epstein-Barr virus infection was an immediate risk for CFS, but more recent work suggests that CFS is heterogeneous. He was the lead co-principal investigator of the PACE trial, which he will talk to during the seminar.


Synopsis:

The PACE trial was a four arm, multi-centre, randomised controlled trial in

641 patients with chronic fatigue syndrome. The four treatments were specialist medical care (SMC), or SMC plus one of three therapies: adaptive pacing therapy (APT), cognitive behavioural therapy (CBT), or graded exercise therapy (GET). The trial showed that both CBT and GET reduced both fatigue and physical disability more than either APT or SMC. This was the case in those sub-groups who also met alternative diagnostic criteria for CFS. CBT and GET were also cost effective, particularly when societal costs were considered. The results were not universally welcomed. Professor White will draw out some lessons to be learnt from this trial.


Location:

Location and contact details for Canynge Hall.


Please contact Laura for further information.

Further information:

The seminar is free, and all are welcome (including members of the public) without needing to book a place. If you have difficulties with stairs, we have a lift to provide access to the lower ground floor.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Here's the transcript:
"blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah" etc.

;)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
If anyone goes, be sure to take your untruth-o-metre with you, to objectively measure the level of untruths in the room. And take your slur-o-metre to make a record of the level of slurs against an entire patient population. And take your scientific ignorant-o-metre to measure the level of scientific ignorance. And take your alteria-motive-o-metre to check for motives and agendas other than the honest pursuit and promotion of science.
 

Seven7

Seven
Messages
3,444
Location
USA
Go and play minute 38 something like that of the kamarof presentation where he says 30 years ago was reasonable to questions the physicality of CFS/ME not today (paraphrasing).

All I thought when I heard the way he said it is that we should play in every situation like this.

 

Seven7

Seven
Messages
3,444
Location
USA
You know how politics play the game, we need to show up to this events and flow them with questions and references and you will see how the nonsense stops:

1) How do you explain the findings by prestigious university Stanford on Citokines abnormalities and explain the basic and ask them..... Or how do you explain the EEGs brain inflammation finding of such and such..... Give links to people.
 

Tom Kindlon

Senior Member
Messages
1,734
An easy one for him: what percentage of patients in the various arms of the PACE Trial were recovered using the original definition in the protocol (my bet is less than 10%, not the 21%/22% that was reported with their new (post hoc), very broad definition).
 
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biophile

Places I'd rather be.
Messages
8,977
http://www.bristol.ac.uk/social-community-medicine/seminars/2014/121.html

The PACE trial was a four arm, multi-centre, randomised controlled trial in 641 patients with chronic fatigue syndrome. The four treatments were specialist medical care (SMC), or SMC plus one of three therapies: adaptive pacing therapy (APT), cognitive behavioural therapy (CBT), or graded exercise therapy (GET). The trial showed that both CBT and GET reduced both fatigue and physical disability more than either APT or SMC. This was the case in those sub-groups who also met alternative diagnostic criteria for CFS. CBT and GET were also cost effective, particularly when societal costs were considered. The results were not universally welcomed. Professor White will draw out some lessons to be learnt from this trial.

CBT and GET helped a minority of patients achieve small clinical improvements in fatigue and physical function, and the NNT was about 7 for one participant to report a small clinical improvement in these self-reported measures. However, PACE also told participants that "a six-minute walking test will tell us how physically able you are", but this did not yield clinically significant results in any therapy group. Employment hours did not improve, and dependence on welfare or insurance payments increased during the trial. Total service use or costs did not differ between groups.

PACE also admitted to not using the CDC criteria for CFS properly, and one of the authors of the London ME criteria has repeatedly spoken out harshly against the version used in the trial, so that could be just as improperly applied. Not to mention David Tuller's point about these being subgroups which first had to meet Oxford CFS criteria, they were not independent groups. 80% of candidates who were provisionally or definitely diagnosed with CFS before the trial were excluded from participation. The medical assessment may have also excluded some patients with ME, since some symptoms and signs or blood tests tolerated in ME definitions were regarded as red flags for alternative diagnoses.

The lead author of the cost effectiveness paper has recently admitted on the PLoS website that CBT and GET are probably no longer cost-effective at 2 of the centres in the trial which delivered CBT or GET. The cost-effectiveness was based on assumptions about the value of QALYs, remember that total service use or costs did not differ between groups and CBT/GET did not lead to participants becoming more productive members of society.

The lessons that White et al learnt from this trial are that they can get away with questionable protocol changes as long as they are on the right side of the politics and spun in the right way with platitudes about high quality science and dismissing critics as ideological extremists. They got away with abandoning all published protocol-defined improvements and recovery in fatigue and physical function and replaced them with questionable post-hoc thresholds. They got away with claiming that 60 points in physical function is normal and recovered, despite commonly being regarded as major impairment even in their own trial. They got away with claiming that their definition of "recovery" was "conservative" and "comprehensive" despite being achievable without any significant improvement to fatigue or physical function in participants who were previously classified as having severe disabling fatigue. They got away with publishing several factual errors which just happen to be in their favour. They learnt that multiple major deviations from the trial protocol will lead to requests for information on protocol-defined outcomes etc but that these can be dismissed as vexatious and part of an anti-psychiatry campaign to discredit the authors. Their behaviour was rewarded with accolades and uncritical or even gullible praise/defense and nods of approval.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
The trial showed that both CBT and GET reduced both fatigue and physical disability more than either APT or SMC.
This is a bug-bear of mine. CBT and GET did not reduce fatigue or physical disability more than SMC.

In the video that Dolphin posted the other day, Trudie Chalder said that the PACE trial was originally set up to compare the effectiveness of CBT and GET with SMC:

@ 3:20 "So really this particular study was carried out in response to the fact that although earlier smallish trials had been conducted, some of the patient organisations were not convinced by these studies and felt that adaptive pacing therapy and specialist medical care would be a better alternatives."

I don't know how accurate it is to say that patient organisations were interested in SMC. Is that perhaps a bit of artistic license? If the trial authors wanted to show that CBT and GET were better than SMC, then they failed in their study design, and in their results.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Here's the transcript:
"blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah" etc.

;)

Translation: "babble babble babble babble ...."
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If anyone goes, be sure to take your untruth-o-metre with you, to objectively measure the level of untruths in the room. And take your slur-o-metre to make a record of the level of slurs against an entire patient population. And take your scientific ignorant-o-metre to measure the level of scientific ignorance. And take your alteria-motive-o-metre to check for motives and agendas other than the honest pursuit and promotion of science.

NO. Bad idea. Take your untruth meter with you and it will explode when its overloaded! Ditto the others.
 

biophile

Places I'd rather be.
Messages
8,977
I have read several places that patients are indeed interested in specialist medical care. However what they mean by specialist would rule out 99.99% of the "specialists" in the UK. They mean people like Nigel Speight.

Indeed. SMC in the PACE Trial specifically prohibited any experimental treatments.
 

biophile

Places I'd rather be.
Messages
8,977
If anyone goes, be sure to take your untruth-o-metre with you, to objectively measure the level of untruths in the room. And take your slur-o-metre to make a record of the level of slurs against an entire patient population. And take your scientific ignorant-o-metre to measure the level of scientific ignorance. And take your alteria-motive-o-metre to check for motives and agendas other than the honest pursuit and promotion of science.

I wonder if they consciously decided not to do this seminar a day earlier on 1st April i.e. April Fools' Day.
 
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biophile

Places I'd rather be.
Messages
8,977
@ Bob and Alex.

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