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Thanks @chrisb

That's the pre-trial protocol criteria isn't it? And not the SF-36 PF <60 used in the analysis?

Don't suppose you have a link for that do you?

Excellent blog on this by @Lucibee Why use of subjective measures in clinical trials can be problematic https://lucibee.wordpress.com/2019/01/08/why-use-of-subjective-measures-in-clinical-trials-can-be-problematic/

Thanks.

The file is a bit odd. I have done a screenshot of the body of the email sent in reply to the request for guidance. The original request has been redacted.

I'm hoping that enough pressure can be put on them to share the data.

In response to the Expression of Concern, the Statement of the Authors says: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 During negotiations with the journal over these matters, we have sought further guidance from the PACE trial REC. They have advised that public...

Yes, that was my thought as well. And the acknowledgement that KCL is seen as a centre for CBT by patients does suggest that it has been/was getting a biased sample: getting patients who went there looking for CBT. (And equally, odd though it seems to us, patients were going to Barts/QMUL for...

Two interesting posts @Lucibee . I'd refer to 20040927 TSC as well, p8/9: King's (where Wessely and Chalder were/are based) was seen as a CBT centre and also one which 'has a higher portion of referral with mis-diagnoses or previous treatment'.

Yes, I agree it is apparently common and not specific to PACE.

I have finally got some time to start reading through the minutes of the TSC. Something I noticed has relevance to the discussion I @Michiel Tack and others were having about the patients. It's in the minutes for the third meeting of the TSC, on 29/06/2005 (or possibly 29/07/2005). On page 4...

Yes, I think that would be an interesting angle. In this regard I was interested in the Morton presentation slide 26 https://www.meassociation.org.uk/wp-content/uploads/ME-Auckland-Karl-Morten-Presentation-12.12.18.pdf

I think this is a very interesting point. My own view from my own experience and one that I have held for some time is that research currently is focused on trying to find some sort of marker in patients and then work back from there. I and many, though by no means all, trace our ME to a nasty...

So many 'former sufferers' have been unhelpful.

But as his Twitter profile shows he is interested in studying how stress can cause illness.

Thanks, Phil. I think part of the problem is that they all do genuinely think it's real and physical, but then there is only the physical, there is no 'ghost in the machine'. Carmine is interested in how psychological stress can cause physical symptoms. He, like Sharpe, wants to see how they...

Yes, something like that could work. It's certainly true focus is one of the problems.

True, though I'm not sure it would capture the full disability.

If true, I'm sure we all wish Sonya all the very best and a fast and full recovery. Perhaps we could ask @Action for M.E. that if you are going to respond to this study, you will take into full consideration the points raised in this thread and in the excellent blog by @sTeamTraen Tagging in...