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I've only just found time to catch up on this blog. It's a complicated topic to explain concisely, isn't it? I thought I'd add another thing that could have been mentioned!.. the initial publicity push to recruit for the FITNET-NHS trial that the Science Media Centre had helped arrange...

It was in other papers, and more general 'medically unexplained' stuff I've read. I've not looked into the details of any of it, but they sometimes talk as if there are particular forms of movement disorder that are more likely to be 'functional' than others. It could be that this is BS, but my...

You mean this one?

For anyone still trying to follow this, another update from yesterday: https://community.cochrane.org/news/cochrane-governing-boards-response-cochrane-iberoamerican-networks-statement-members

Goldacre studied under Wessely - there are a collection of comments from him here: https://forums.phoenixrising.me/index.php?threads/ben-goldacre-checking-if-clinical-trials-reported-what-they-said-they-would.41627/#post-672243 I can't update them anymore.

That seems relevant. Thanks for pointing it out. Hope it's of use for those raising concern about this.

Just to remind people, @Forbin was commenting on that paper because Landmark tried to use it to undermine concerns about relying on subjective self-report outcomes in nonblinded trials: The study on forum use clearly does nothing to support Landmark's argument, and it's difficult to believe...

I was searching for CFS FITNET stuff, and found this: http://www.isrctn.com/ISRCTN12612526 All outcomes look like self report, and "The follow-up duration is four weeks and will be measured by weekly questionnaires and finished by a follow-up assessment." Four weeks is not long, and looks...

Any informed GET critic there? Programmes like this always scare me.

Looks like Hunter co-authored with Jon Stone on some 'functional motor symptoms' papers. I don't really know what I'm talking about, but I sometimes get the impression that functional motor symptoms stuff can be a bit less quacky than other functional stuff (there is more use of objective...

Lots of important decisions about research funding, training on ME/CFS, medical student education, etc are being taken behind closed doors by the same group of pro-PACE 'experts' as ever. They've had decades working their way into UK medical institutions, and that we've shown their arguments are...

I worry that some people can think advocacy efforts are further ahead of where they are. IMO we're now winning the public discussions and debates... but a lot of the important discussions go on behind closed doors where we don't even have anyone in the room.

It does seem like there's a lot of crap work in this area, and I can't stand Paul McCrone, but maybe that's reason to try not to be too critical of someone starting out on ME/CFS, who may be open to discussion and trying to improve? I've not watched her talk yet, but just felt that the amount of...

He is an Establishment figure, and you see him turning up in various places, eg the recent air pollution stuff: https://www.theguardian.com/lifeandstyle/2018/oct/08/never-exercise-at-rush-hour-six-ways-to-avoid-air-pollution Generally, the UK establishment figures with any interest in CFS stuff...

I think that Holgate could still make useful contributions to the CMRC so don't think I want him to resign, but him being open about past mistakes is probably the most valuable thing he could do right now.

Whenever I'm about to listen to someone I like speak publicly I always get really nervous! LOL at @dave30th singling out Fiona Watt at the CMRC. LOL at the 'has anyone here felt harassed' bit too. I wonder if that was the sort of thing they were expecting? I realise this was all impromptu...

Welcome to the forum! You have been promptly moved to our pre-prepared discussion on this.

Nice one. Thanks to the authors. I expected it to draw more on the points made by Courtney and Kindlon in the comments section of the Cochrane review, but it's really quite different, focussing more on the problems with the studies included in the Cochrane review, so it works more as a...

Presumably that's the BMJ? That's interesting. Presumably that's a reference to the Wearden on-line course that a government minister had just been praising? Agreeing it's awful, but then wanting to keep it in place for 2+ years doesn't sound great.

Oh it's just nonsense, but that doesn't stop Bristol Uni from claiming it.