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Yes, he will has just posted the wrong link into his tweet. Nice to see he's a reader of the forum! Makes it undeniable that he's aware he is misrepresenting the views of his critics.

Depending on exactly what you requested in the first place, might it be better to make a new request? (This is a question from a position of near complete ignorance, I've forgotten all the details of this request). I'm not sure how much leeway there is in how a request can be interpreted, if...

This link to their 2017 report should work: https://healthwatchlancashire.co.uk/wp-content/uploads/2014/06/REPORT_ME-CFS_June2017.pdf

Shouldn't be shocked... it's QMUL!

Trials assessing CBT for psychosis seem to report less positive results when the researchers assessing patients symptoms has been blinded. I expect that psychosis is a condition better suited to external assessment than CFS, but I don't want to be too down on any sort of attempt to reduce...

The article draws attention to how the ME Association's website on the controversy is problematic: https://www.meassociation.org.uk/about/what-is-mecfs/ There's a lack of meaningful details and it will encourage journalists to write unhelpful articles like this imo. @Russell Fleming - is there...

@Tom Kindlon also made a lot of notes on that O'Dowd study here: https://forums.phoenixrising.me/threads/cognitive-behavioural-therapy-in-chronic-fatigue-syndrome-rct-of-group-programme-odowd-et-al-200.29241/post-445932 He also posted this on pubmed commons, though that system has since been...

I just had a quick glance at this paper (I'm failing to keep up with what I want to read at the moment) and noticed that they rated O'Dowd 2006 as having been blinded. I remember looking at that trial ages ago (it's reported in a 140 page pdf), but can't remember much about it now...

Thanks to @Mr Topple (assuming this is Steve) for all the work he has done trying to draw attention to the problems around PACE. It's really great to have someone raising this topic with an audience that wouldn't have otherwise even heard of it. I share Edwards' concern that a focus on Myhill...

Thanks. That's more accurate, but makes it even clearer that Helland has no justification for claiming that being part of a trail is useful as some patients can improve outside of trials.

So Helland seems to recognise the problem with self-report outcomes (here at least... she made no mention on it when praising SMILE!), but goes on to suggest that results show that being in a trial has a positive effect? Is it an accurate translation for "more patients in both groups actually...

How off were you? If they were adjusting for variables we don't have (age, sex, etc) couldn't there be very minor differences without it being much of a problem?

I'm not sure anyone knows the true figure. 'over 5 million' seems to be the commonly used figure. A possible supporting source: https://impact.ref.ac.uk/casestudies/CaseStudy.aspx?Id=41185

The problems with SMILE are not so much to do with access to data imo (though I still suspect that there is something of interest in their unmentioned school record data tbh). Tuller's piece on this was a pretty thorough take-down...

Nice one John. Can this be linked with the data already released? If so, it would be interesting to see how subjective and objective outcomes correlate? We might be able to get some valuable info from all that money spent on PACE!

Did they have any response to your rebuttal? Thanks for all your work on this. This seems unduly patronising after they were reduced to straw-manning you!

Excerpt: https://www.theatlantic.com/health/archive/2019/05/faking-cancer-online/588334/ I thought that this article was a bit interesting in relation to some of the controversies around ME/CFS. eg an indication someone somewhere has been faking/exaggerating CFS symptoms can be presented as...

Sorry if my suggestion of using 'biopsychosocial' as a term caused problems. It's so difficult to explain things precisely and clearly. I probably should have avoided any language that would not be widely understood by everyone there, with the priority being getting something through rather than...

Some discussion on this in here too: https://www.s4me.info/threads/me-is-not-a-functional-disorder-me-association-13-000-petition-sent-to-nice.224/#post-164513