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She was a co-author on PACE, and their recent response to Geraghty: http://journals.sagepub.com/doi/full/10.1177/1359105316688953 That included a defence of their 'recovery' claims. Anyone push her on that?

I understand the concerns, but no petition/project will be perfect, and I've put my name to things that have had elements I'm really not happy with. It can be difficult to constructively criticise more personal and emotional forms of advocacy. I've got to admit to feeling irritated with Janet...

There are legitimate concerns about the use of surveys. I'm not sure how strong a card they are, and NICE heavily downplayed these results last time. After pointing to the problems with subjective self-report outcomes in unblinded trials, we need to recognise how survey results can be biased...

I just had a little flash of how much I take for granted the improved coverage we've been getting. Every couple of days there's a new article out that five years ago would have had me weeping with joy!

The fact that the research they do fund is so often harmful BS that attracts loads of criticism is a bit of a problem. Seems that the people they turn to as 'experts' on CFS are often quacks.

The reanalyses provided results for the outcomes pre-specified in the protocol Sharpe was a co-author of. Also, he wasn't 'Simply responding to accusations of bias' - this is his tweet that started the exchange (easily found by anyone who scrolls up): What is Sharpe doing?

Magenta is the trial with actimeters (although Crawley says that she thinks kids cheat with them, so who knows what that means).

Tony Britton posted a scan on twitter:

Only looked at the abstract. Are they claiming associations are explanations? Seems odd when the associations are between things like 'fatigue', 'reduced activity', 'concentration problems', etc. It's like a doctor saying 'we have an explanation for your fatigue - you have chronic fatigue...

I think it would be ideal to close most of the current services and start afresh. This would help get rid of a lot of those who've caused the most trouble for patients, be a clear signal that there real problems that are being recognised and that the way others within the NHS (and UK medical...

Hmmm... I'm feeling suspicious.

Good to hear you were there to raise those issues. In situations like that I always wonder if they just act ignorant. Did he make any criticism of them for dropping actimeters? My suspicion is that there's a lot of this, and then things change when the patients are out of the way.

I don't find that too reassuring - if I was a staunch PACE defender keen to get GET and CBT in NICE I think that I'd take a similar approach at a meeting like that (with a lot of engaged patients). Did they criticise PACE? Still, fingers crossed.

LOL - I'd really love to know how it is he thinks he's deciding which questions are 'real' or 'curious', and which are 'accusations' or 'tricks'. He must have some internal rationale that he imagines makes sense, or else why would he be behaving like this publicly?

I was a bit disappointed in the PACE section, which is what interested me the most. Also a shame that the Conversation chose to link to their not very good piece on the SMILE trail rather than Edwards' piece on the PACE tribunal ruling...

How can we know how many times those promoting myths have won? We'd look back and now see it as reality having won in the long run.

I can focus on any problems, maybe in the hope of avoiding them in the future, but this is still definitely a good thing.

I think it's too strong. They often leave room for the potential for a range of causes of ill-health to be included within CFS/ME, even if they do not emphasise the potential for physical problems that cannot be reversed through rehabilitation. It's so easy for the topic of ME/CFS causation to...

LOL - this is what he thinks research looks like when everything has gone well?

The 'all in the mind' phrasing is loose in a way that I think is unhelpful, but even just the "recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition" bit is unhelpful imo. Wouldn't it be better to just have "recognises the fantastic work...