Science for ME PACE Briefing document

Quoting this here so that the typo can be addressed.

 

Thanks, Andy.

Thought the typo had been addressed before and been corrected, and only the URL was to the old version, but now it seems somehow it slipped in again (or rather the "p" slipped out again).

 

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"If these weak and null results had been published in 2011, it seems likely that NICE would have withdrawn its recommendation of the use of CBT and GET for ME/CFS."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

 

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

 

The reference is supported with citations in that document.

 

I think Tuller just said that he only knew of one.

I've got nothing to cite on this, but informally I've heard about PACE being used as a case study for poor research in the UK.

 

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.

 

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.

 

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...)

 

The PACE briefing document is included again as part of the briefing document for the backbench debate on ME next week, https://www.meassociation.org.uk/wp...ing-on-M.E.-for-Backbench-Debate-18.01.19.pdf

ETA: MEAction version, https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf

ETA2: and link to AfME version, https://www.actionforme.org.uk/uploads/ME-parliamentary-briefing-jan-2019.pdf

 

I will be letting my MP know about this via his senior adviser. . Plus I will be giving the briefing notes too. Then keep my fingers crossed

 

Just a random thought, is it worth attempting to pull a document together that address the flaws in the Cochrane review, in the same way that this document addresses those in the PACE trial?

 

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.

 

Good enough for me, no point doing more work than is necessary.

 

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.