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Makes me nervous... I have to say, I can be less than enthusiastic about 'awareness raising', when there's still such potential for it to blow up in our face. I don't want to be a trend until we've got a lot less quackery hanging around us! Having said that, Medscape seem to have done some...

Thanks for those notes @Sly Saint - really useful for those not able to watch it all. Any particular public comments/replies that you thought were good?

Thanks Graham and John! I don't know much about how NICE works, and it's been a long time since I read the NICE guidelines, so my comments might be worthless, but I thought I'd say some things that came to mind as I read through. This probably doesn't matter, but I don't think that there's a...

Hammond is so annoying. He always evades the important specifics, and retreats to general calls for more 'bio-medical' research, or something like that. That sort of thing looks bad coming from Sonya Chowdhury, but it looks even worse coming from someone who is being paid to work in a specialist...

If there was compensation for everyone in this situation, and then maybe they'll have a real incentive to change.

And here's the paper that article is about: https://ueaeprints.uea.ac.uk/58235/1/1351_Shakespeare.pdf

What a piss-poor argument. I'm amazed that there are still people who want to try to defend PACE without engaging in any of the details of the debate. It's so odd to me.

I started writing a sit-com based on PACE misdeeds with some other people I know. Turns out that writing a sit-com is really hard. Also, lines that seem hilariously stupid in an academic paper are not necessarily going to make killer gags in a sit-com.

I fear there will be some annoyingly thoughtless stuff in there. Last night I found a thesis on CFS that I'd downloaded a while back and never read, and was thinking... 'wow I used to find time to read these all the way through'. Kimberly Goldsmith's one on PACE doesn't seem to be available...

"We need to have more confidence in the people chosen to lead big projects. " Hmm... then you need to do more to hold to account those who place people like White in charge of major projects! "Excellence is the primary qualification so gender, race, ethnicity, disability, sexual orientation...

Phil Parker is impressed with the video: Standing up for Science... shoulder to should with magical Phil.

Thanks for the link. I wanted to watch it, I started to watch it... I stopped watching it. Too slow. Needed some more pointed questions! Hearing Sonya talk about Action for ME really makes me feel sad that well meaning people donate money to them.

OMG - people are reading her papers, watching her talks, and then complaining about when she misrepresents the evidence... imagine if we treated politicians like this!

Crawley seems more interested in inciting disdain of people because they're critical of her work, rather than because they're disabled... it just so happens that it's disabled people who are most harmed by the problems with her work! From some of the nasty stuff still available on youtube, I...

I think it's best to be cautious with this stuff, at least for now. Personally, I think it would be best to start by asking questions about what evidence there is to support the claims made in the video, rather than making demands. We want to encourage people to investigate the problem. The...

LOL - I reckon that paragraph would seem nonsensical to people not already familiar with all this. It's like with PACE - things are so bad that there are parts which sound too absurd to be true.

They're a private company notorious in the UK for doing poor quality disability assessments that led to lots of seriously ill people getting thrown off benefits. IMO - they got more blame than they deserved for the government's policies.

The Oxford criteria studies were not 'banned', but a major report was very critical of the Oxford criteria. Stating: "continuing to use the Oxford definition may impair progress and cause harm." (I'm sure there's a long report saying this, but google brought up this summary paper saying the same...

I don't think that's right, although Wessely has worked with the DWP in various questionable ways. His links to insurance companies are much weaker than those of someone like White too. He's attended conferences funded by them, wrote a piece for Unum...