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Isn't Davie consistently appalling?

I assumed it was TEDx taking action because their are so many problems with Crawley's talk, and it clearly breaches their guidelines. Some other TEDx talk have been made 'unlisted' and have had a note explaining problems with them added, eg: I wonder if TEDx wanted to do that with Crawley's...

According to this playlist it is now a 'private video': https://www.youtube.com/playlist?list=PLz9sRi8Qg5wDPdB-eEOuvlUlWHtOsZtgl

There's also a broken link to it in the Paediatric CFS clinic's page: http://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp

Looks like this video is now offline. Bristol still has a page promoting it, but with a broken link: https://www.bristol.ac.uk/ccah/news/2017/esther-crawley-tedx.html

Being honest with patients about how limited the current treatment options are sounds like a good thing to me.

There is definitely still value in people writing as individuals. Sorry for not putting time into this. IMO these sorts of things are a really sensible priority for people to try to contribute towards.

Thanks for the updates and to everyone paying attention to the details of this.

Some PACE comments in the abstract, though I can't access the full paper on scihub yet:

WTF is that title? What are they referring to? Patients reporting a diagnosis of ME/CFS - as if wanting research to use a recognised criteria is dismissing young people's perspective? I couldn't access at that link, but it was on sci-hub...

There are so many problems with the UK media, but so much depends on getting people to understand that details that it's difficult to get people concerned by problems in one area to share concerns surrounding an issue like PACE. Still worth different people having a go, but I expect there will...

I'm sure that there's a worthwhile paper in this if anyone managed to piece it together.

So now a “rational explanation” seems to be nothing more than a narrative that fits in with their prejudices and that they can manipulate some patients into 'accepting'. The Burton paper on 'rational explanation': Burton, C., et al., Explaining symptoms after negative tests: towards a rational...

For people planning to send out a link to others who haven't been following this issue closely, I reckon the blog is probably less good than the fundraising page for letting people know why they should donate. For friends/relatives, or patients less aware of PACE, who might be considering...

It seems that those sorts of social media groups attract far wider groups that a specialist forum like this.

Clare McDermott is the corresponding author of this new paper with CureME at the London School of Hygiene & Tropical Medicine. https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12857 Can't say I'm enthused by McDermott's involvement after the work discussed in this thread. Qualitative...

I'm an idiot and misread the closing date as 1st April.

Looks like this is only for those living near the Private Eye offices! edit: I'm an idiot and misread that as 1st April. Given that Phil Hammond is their medical guy and works with Crawley, this would be a long-shot anyway.

I'm not sure about this letter. Maybe, but I don't think we know that and a reference from 1990 doesn't do much to prove it. Does this Chalder study really tells us anything about the efficacy of CBT/GET? I guess it indicates that it's not hugely effective. I don't think that citing a...

Excellent!