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It looks like there's a lot of overlap between CFS and how they define 'frailty': "Frailty phenotype was based on five criteria (weight loss, exhaustion, grip strength, low physical activity, slow walking pace)."

I'm sure I saw tweets from people complaining Godwin had said things he had not. Don't make me look back through that huge thread to find them now!

Looks like a couple of people misunderstood Godwin's tweets and were making unfair criticisms of what he'd said. Would be useful if people could avoid doing that, or apologised promptly when mistakes were made. [edit: especially as twitter does that truncating thing, and misses out tweets, it's...

The 2015 ME Association report on their poll also includes lots of patient testimony from respondents: http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf

Looks like David's starting to dig into the IAPT stuff, which seems as grim as anyone could fear: http://www.virology.ws/2018/06/13/trial-by-error-a-curriculum-for-treating-cfs-with-cbt/

Oops - edited.

Thanks for letting us know. Hopefully the absence of the now famed S4ME logo won't do too much harm!

Aren't they funding one of Crawley's PhD students, who is currently promoting prejudice about patients rejecting evidence in her papers? I'm worried that Action for ME can view a failure to learn from their mistakes as some virtuous form of open mindedness.

I think that intellectually it's best for us to be honest and aware of how much uncertainty there is around ME/CFS, but the problem is that it's difficult to motivate people to campaign on 'uncertainty', which can push advocacy groups to take positions which are then difficult to defend. If we...

Post-PACE, I'm a bit surprised Action for ME decided to be involved with anything that could even remotely back-fire on them.

I've not seen the full text, but Wessely doesn't like it, so that's a good sign:

There is so much uncertainty and controversy around ME/CFS that taking any position on lots of issues will end up annoying some people. As/if ME Action tries to do more it will end up disappointing more people. There's not much that all patients agree on. PACE is a rare example of a unifying...

I wonder if Bishop will respond. It pisses me off how she says so many good general things about the need to address problems with research, but then with CFS she ignores all the problems, and even helps White/Crawley's attempts to discredit their critics. Thanks to David for all these. I...

Yes - especially as I'm sure it's less than gratifying to have people make these criticisms of all the work that was put into this. Sorry - I just can't help myself!

Thanks for all your work on that - sounds like you got a positive change there.

They put a lot of resources into maintaining their profile and a lot of people, including myself, were directed towards them by the NHS when we first got ill. For a long time they had the biggest membership of UK groups (I think that they may have stopped releasing figures for the last few...

I had criticisms of this paper, and I think that parts of the approach attempted was probably a mistake, but I also don't think people should go over-board about the problems with it. It's a long way from a disaster imo, and I expect that many of the things some of us would want to change to...

I missed this - thanks to those asking questions, and to @JenB for the responses. I want to add my name to those worried about anything that might risk increasing Action for ME's influence. At the moment, particularly in the UK, we really need to be hammering away at the PACE trial, the way...

I've just read the briefing, and I thought it was pretty mixed. There was some good stuff in there, but I thought it was a mistake to try to cover so much, and that it would have been much better to just focus on the PACE trial (along with other similarly flawed research). "There is currently...

Okay. I've just seen some people on 'conspiracy' style websites misunderstand it out of context, and not realise it was meant to be a funny thing to say.