Search results

Yeah - it made me think of a civil servant's attempt to avoid the real issues.

My main concern is that this is being promoted to people working with patients before we have any evidence that it's actually useful for patients. It's ridiculous. Having a major patient group behaving so badly also works against our attempts to argue that treatments like CBT/GET/LP/drugs/etc...

She does seem to have been defending Cochrane a lot recently. I can't claim to have a good understanding of all the heated politics around Cochrane at the moment, but I do wonder if she might want to avoid being as critical of Cochrane's handling of this case as I think people should be. Maybe...

I've still not found time to look at this report, but I'm sure that carefully done submissions would be useful. Also, remember to praise the good bits that others might want to try to remove with their own submissions.

Having made a sound argument founded upon accurate accounts of the evidence is not a COI. But having a history of having misrepresented the evidence is reason for concern. With something like PACE, I think that it should be seen as a potential COI for people who have been working in the area to...

Yeah, this response makes me think that Cochrane is even worse than I'd feared and leaves me dreading whatever they're going to do next. So many annoying and misguided things about it. I'm going to have to re-read it with lowered expectations so I can avoid being distracted by my eyes rolling...

The on-going SMILE mess is making me want to give up hope for humanity. Thanks to Tuller for pushing on with it - are these letters getting better? Practice makes perfect? Or maybe it's the same letter copy/pasted and my mind is just playing trick on me!

Is it just me, or has a lot of really annoying stuff been posted today?

I don't think that's a helpful way of seeing things. Whenever that is viewed as the core issue it's leads to the inevitable and irrelevant conclusion that the functioning of the mind is a part of the functioning of the body, etc, etc.

It looks like now anyone can join Cochrane, so patients wanting to try to improve the quality of their work can contribute and vote in any future elections: https://community.cochrane.org/organizational-info/resources/support-cet/membership https://www.cochrane.org/join-cochrane This is...

Best wishes to him. It's so difficult for individual patients to work out what is best, what is pseudo-science, what is questionable but plausible science, etc. The state of things in the UK is so terrible, but the situation in America brings its own problems and risks for patients, and it did...

Does anyone know how Cochrane's CFS reviews fit into that chronology? Were things like Larun's published exercise review and the IPD protocol a part of the central executive having more control? A part of an incompetent attempt to raise standards and produce reviews of real interest to...

That's what I thought on seeing Gutherdige's chart. This study, and the responses from Kindlon and Bramsen, were some of the first things I read when I started looking more seriously at CFS research. It never occurred to me that this would go on to be one of the most widely cited CFS studies of...

That's a fair point, but the null results for employment kept being ignored anyway. If the paper was retracted due to the researchers refusal to follow data sharing requirements, I suspect that a thorough review would still be able to note the results and the reasons for withdrawal. I was going...

That data would still be available so it's hard to believe that withdrawal of the paper would be unhelpful. Citing their poor results and then pointing out that the paper was withdrawn due to their refusal to abide by the data sharing requirements they'd signed up to sounds okay to me.

It seems unlikely that they'd fundamentally change the treatment for their follow-up trial. Maybe there was just some misunderstanding about what actually happened?

I should probably keep my ill-informed speculations to myself. Learn from Watson's mistakes!

I've never been enthused by Watson's involvement with OMF tbh, and I suspected... edit: thought I'd remove unfounded speculations.

I wonder if the hype and media push around this research could relate to the REF2021 process, and KCL's desire to be able to present their CFS research as more than just CBT/GET?

Sure - ideally we'd be able to find out enough about the individuals to let us do that. But it really does seem like UK medicine has been unusually terrible with ME/CFS for a long time, that a lot of prejudices have seeped into UK medical culture, and that the people in positions of authority...