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I remember having a few exchanges with him there - he really didn't seem to value debate, or take being criticised at all well, so I worry that my responses may have helped drive him to his current campaign to undermine the work of all advocates that don't condemn every rude tweet that some...

It is difficult, as the PACE team flit between presenting PACE as purely pragmatic, and something more. I think that it's generally best to give them leeway on this, and criticise them in areas where they have less leeway to wriggle out of things, but then there are things like this, where they...

Thanks Suzy. It looks as if you've helped us dodge quite a few bullets there. All the work you and Mary Schweitzer have done on this has been amazing (and to me, a little bewildering if I'm honest).

I've just been reading an ICO decision notice that used some defensible but strong criticism on a forum to help justify a refusal to release PACE info (a comment I made about a tribunal ruling has also been used against other patients). Easy to find examples of academics using patients...

Did you mind? #sorry if it seemed patronising. I like to be babysat! If I didn't have people pointing out problems with what I posted I'd be in a much worse place today. I assume people here are generally trying to pull together in the same direction.

Welcome to the forum @Diane O'Leary - thanks for joining the discussion of your paper.

My cynical speculations about the HRA are just on the right side of the line I've imagined for myself... Also, it's much easier to see how other peoples' words could be unhelpful or used against us than to spot it in ones own posts!

QMUL, the PACE lot... I expect that there could have been a few quiet words from other interested parties. That they seem to have used some very similar wording to what was seen on PACE 'FAQ's doesn't encourage faith in their truly independent frame of mind, but it's still worth avoiding...

I don't think that's right. I think it's more likely it was written by people who i) fell for some QMUL spin and ii) did not want to challenge the systems of oversight for UK medical research.

That's a strong claim about a major piece of research that would should shape understanding of the value of the treatments that they had developed.

Thanks for those e-mails. The pleasure I can from reading boring old PACE correspondence makes me realise I'm a true nerd. Is there any demand for a full-time PACE historian?

I expect that lots of people with different forms of health problems end up being included within all the different ME/CFS criteria, even if some are better than others. Some people seem to go on to recover, even if it's a small minority of those who've been ill for more than a couple of years.

There are people who've said pacing led to them recovering, and improving to close to recovery. It shouldn't be promoted as something that can be expected to lead to recovery though. IMO it's more about trying to make life as good as possible while ill.

That sounds less than impressive. Might be worth taking an exact quote of that for those looking to raise concern about the ethics of Stubhaug's approach.

Just the name and e-mail are starred, and that's what normally indicates required fields. I could be wrong, but I'd be surprised if her blog excluded those without ORCID.

Looks like just name and e-mail is needed. I'd be surprised if she wanted to exclude patients!

They may have just not got to you before the weekend, so it might not be up until Monday now.

I think 'pacing' is really difficult to define, partly because it has become a tool patients feel they need to use in order to avoid being pressured into GET. There is this view that if you are ill you have a responsibility to be doing some treatment to get better, even when there isn't good...

Paul Glasziou has been pretty bad for us, so I'd say that makes the blog even more impressive.

I probably should have posted that comment under her blog as a thanks to her.