Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

TiredSam

TiredSam

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Anything they do like that is basically cheating, and they are under such scrutiny from experts now that it would be picked up and publicised immediately. I hopefully think they won't be able to get away with anything like that again now that the climate is changing. And they really aren't clever enough to come up with anything that will fool watching statisticians, look at how crass and clumsy their manipulation of the PACE trial data was. They got away with it because of their authority and the connivance of insurance companies, government and an easily manipulated media, not because they did anything clever or sophisticated.
 
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worldbackwards

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TiredSam said:
And they really aren't clever enough to come up with anything that will fool watching statisticians, look at how crass and clumsy their manipulation of the PACE trial data was. They got away with it because of their authority and the connivance of insurance companies, government and an easily manipulated media, not because they did anything clever or sophisticated.
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But they created the climate in which it would go unnoticed, and which continues to look after them as their own children. They made people complicit who didn't have the faintest idea what they were doing and who's reputations also ride on its continuing success. PACE isn't just a study, it's a walled citadel. Credit where credit's due.
 
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Sidereal

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https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/comment-page-6/#comments

Simon wessely
SEPTEMBER 23, 2016 AT 5:38 AM
Sorry to spoil the party but some cold facts are necessaey
1. The PACE trial remains an excellent trial and a model of how to deliver a complex intervention RCT. Read the 2012 Lancet paper again. Check it against the CONSORT statement. You will see it is 100% compliant.
2. Nothing at all has emerged to alter or contradict its key findings. These are that two treatments (CBT and GET) are superior to two others (pacing and standard medical treatment). All four approaches are safe. The effects of CBT and GET are modest but still,worthwhile especially as at moment and for the last 25 years there has been nothing better
3. As others note this does not speak to the causes of CFS but only to management. For avoidance of doubt all the serious clinicians and academics who work in this area know this is genuine condition that causes much misery to patients, friends and family.
4. Clearly we need better treatments but until and unless we do, doctors can safely recommend CBT and GET to patients. Indeed they could and did before PACE – it’s findings were entirely congruent with the previous literature, just that PACE was larger. In my country (UK) there was already sufficient evidence to recommend both therapies in our NICE guidelines before PACE was published. PACE will not be retracted because there is no reason to do so, it is fully CONSORT compliant and so on, but if it had not happened the guidelines would remain the same.

I have written a commentary here on the main PACE paper outlining the basic principles of a sound RCT and why PACE more than adheres to them
http://www.nationalelfservice.net/o...syndrome-choppy-seas-but-a-prosperous-voyage/

I realise that this will not be a popular post. That’s sad. But I think people need to know there is another story here and one that might explain why it is that people continue to cite the Lancet paper and why it’s results whilst not earth shattering are sound.

Finally I should add that I played a part in early days of developing CBT as a management approach to CFS, carried out one of the early RCTs and so on, and know personally all the PACE authors. I am not therefore neutral on this topic, and I continue to recommend CBT to my patients with CFS if they want it. I was not however an author on the PACE study .

Simon Wessely


Simon wessely
SEPTEMBER 23, 2016 AT 7:13 AM
Dave, all of this has been covered extensively in the trial FAQs herehttp://www.wolfson.qmul.ac.uk/current-projects/pace-trial/#faq. Nothing dodgy and nothing to hide. It is perfectly acceptable to make changes to your analytic plan or indeed protocols during the conduct of a trial so long as you explain why, get TSC/DMEC approval, document it fully and make it clear in the publication. All of that was done. The 2012 Lancet paper doesn’t deal with recovery anyway, that was covered in a secondary later publication. In essence though they decided they were using a overly harsh set of criteria that didn’t match what most people would consider recovery and were incongruent with previous work so they changed their minds – before a single piece of data had been looked at of course. Nothing at all wrong in that- happens in vast numbers of trials. The problem arises, as studies have shown, when these chnaged are not properly reported. PACE reported them properly. And indeed I happen to think the changes were right – the criteria they settled on gave results much more congruent with previous studies and indeed routine outcome measure studies of which there are many. And re analysis proves the wisdom of that to be honest. But even then, using criteria that were indeed incongruent with previous work and clinical routine outcome studies, the overall pattern remains the same. CBT GET superior to pacing SMC. Most people who work in the field agree with them by the way – the criteria in the recovery paper itself (not the main lancet paper which never dealt with ) approximate with all the previous work – reasonable and meaningful but not the new penicillin. Am not going to respond to more comments on the same lines except to say it’s very likely that this has been addressed before and covered in previous responses by the authors and the trial FAQs. If you want to use the original recovery criteria you can, but I think that the ones that the trialists finally decided upon are more realistic to patients and clinicians alike . And finally it’s not a surprise that if you use extremely harsh criteria you get lower frequencies- no one has pointed out that the original criteria did indeed give recovery rates for Pacing and SMC that are also pretty daft and don’t match patient experience of either. People do get better on pacing and even just TLC- it’s just that more get better with GET and CBT, but still not enough. OK, enough already. Back to day job.
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Surreal. This is 1984 stuff. So being more disabled than most of the population and lower scores than at trial entry is more REALISTIC criteria for recovery?
 
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worldbackwards

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alex3619

alex3619

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Sidereal said:
Surreal. This is 1984 stuff. So being more disabled than most of the population and lower scores than at trial entry is more REALISTIC criteria for recovery?
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Bad science appears to be often written to match tickbox criteria. Its the stuff not checked that matters. How something can be simultaneously mathematically unsound and good science is an enigma.
 
A.B.

A.B.

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Does anyone have a good source on PACE being important for NICE to demonstrate that CBT and GET work? I am sure there is some. He's finally on social media where his bizarre claims can be challenged.
 
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Sidereal

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adreno said:
Society doesn't run on facts. It runs on narratives. And so far, Simon's simple narrative of "helping the otherwise ungrateful CFS patients" has been winning. The facts are far too complicated for most people.
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Unfortunately, they are continuing to control the narrative. There has been deafening silence about all this in the UK mainstream media thus far.
 
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