Science for ME PACE Briefing document

Adrian said:
I think the latest versions have been corrected. Both the uploaded one and the URL:
https://www.s4me.info/docs/PaceBriefing3.pdf
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Excellent, thanks again to all concerned, clearly explained.

"If these weak and null results had been published in 2011, it seems likely that NICE would have withdrawn its recommendation of the use of CBT and GET for ME/CFS."

Yes, and how many people have been harmed by CBT/GET in these 7 years and counting?

And how many people have been denied benefits, insurance payments in these 7 years?

PACE authors/QMUL bear responsibility for this.
 
Andy said:
PACE’s serious flaws are increasingly widely recognised;[33],[34] it is even being used as a teaching example of bad scientific practice in a number of universities.[35],[36]
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David Tuller has said in this post that the reference to "a number of universities" is inaccurate. See this post from him :

https://www.s4me.info/threads/watt-from-mrc-defends-pace-in-letter-to-times.5491/page-4#post-99372

Finally, it is used at Berkeley for epidemiology classes. I don't personally know of other universities that use it. It has been presented at conferences in various places, but that's different.
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Arnie Pye said:
David Tuller has said in this post that the reference to "a number of universities" is inaccurate. See this post from him :

https://www.s4me.info/threads/watt-from-mrc-defends-pace-in-letter-to-times.5491/page-4#post-99372
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Me: Interesting. I’m glad you’re teaching research methods so that your students might learn how to not set up a trial like the UK PACE Trial on ME/CFS.

Mike: I know. In these classes, I work in ME/CFS as a subject as often as I can. And I have used the PACE trial as an example in the research methods class. First to show the importance of choosing reliable/realistic study outcomes. Also though, I’ve pointed out how the PACE trial team went on a press tour with claims that went well beyond their data. I feel that the impact of PACE on patients would not have been so negative if the team had stuck to talking about what they actually found (in terms of results). But they decided to tell the popular press that they discovered how to make people with ME/CFS recover. Again, a claim that’s just way beyond their actual data, even setting aside critiques of how they arrived at those data. Also, in the abnormal psych class I talk about how in some cases psychosocial models for disease aren’t as strong as many people assume and that many conditions that were once thought to be psychosomatic are now understood to not be.
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http://microbeminded.com/2017/12/07...-vagus-nerve-mecfs-latent-infection-and-more/

ETA: That is where ref 35 of the briefing document points to.
 
Arnie Pye said:
David Tuller has said in this post that the reference to "a number of universities" is inaccurate
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Just to clarify slightly, I think I said that I only knew of Berkeley. I didn't exclude that it was being used elsewhere, just that I didn't know about it. So I wanted to make sure that if the statement was going to be used, it was not being based on something someone thought I'd said.
 
NelliePledge said:
Presumably @Brian Hughes also uses as a bad case study as part of teaching so that would be another Uni in yet another country too?
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Thanks for picking up on this. However, I am taking a break with my pseudoscience/health class at the moment, and so technically I have not used PACE as a case study thus far. (Hopefully 'Psychology in Crisis' will be recommended in Ireland/UK universities soon, at which point it can then be said to be presented to students more widely...)
 
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Esther12 said:
From what I remember the Vink paper looked at quite different issues to the ones raised by Courtney in his Cochrane comments. It could be valuable to have a collection of all the strongest criticism summarised in one place.
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I think once a new version is published in May (Ok I don't really believe that will happen) then it may be worth some people getting together to write a detailed commentary on what is there, what has changed and also what the likely impression is it will give readers (e.g. concentrating on things like the plain language summary which may not reflect all the issues). Also a briefing document may be good then looking at the history so that a simple story with links to evidence is available to people like MPs to show how Cochrane has failed (and will likely fail again!),
 
Adrian said:
I think once a new version is published in May (Ok I don't really believe that will happen) then it may be worth some people getting together to write a detailed commentary on what is there, what has changed and also what the likely impression is it will give readers (e.g. concentrating on things like the plain language summary which may not reflect all the issues). Also a briefing document may be good then looking at the history so that a simple story with links to evidence is available to people like MPs to show how Cochrane has failed (and will likely fail again!),
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I wonder if something before then might be helpful for applying pressure to make sure that the problems with what has happened are properly acknowledged?

I don't know, and I realise there are millions of things to respond to (the HRA letter, PACE 'FAQ's, etc), but reckon there's some value in a lot of potential projects if we had an army of people able to focus on doing that work.
 
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