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I don't hold out much hope of coming up with a questionnaire that will not be prone to problems with bias. I do think that there are better ones that the Chalder Fatigue Scale already, and moving on from that would be something, but I think that research which assumes fatigue questionnaires are...

Thanks for all these updates. It sounds like things are looking up in Sweden. Thanks to all the patients who've been working to improve things there. That sort of view of things worries me a bit, as it makes the biopsychosocial sound innately reasonable - psychological and social factors are...

Moderator note. Thread on measuring of fatigue has been moved here: https://www.s4me.info/threads/measuring-fatigue-discussion-of-alternatives-to-questionnaires.7325/ I get the impression that a key problem we're facing is that we don't have a good measure of 'fatigue' yet people who've made...

Moderator note. Thread moved from: https://www.s4me.info/threads/persistent-fatigue-induced-by-interferon-alpha-a-novel-inflammation-based-proxy-model-of-chronic-fatigue-syndrome-2018-pariante-et-al.7050/page-19#post-130652 I get the impression that a key problem we're facing is that we don't...

It is rational to prefer RCT results over anecdote. There are still plenty of potential problems with RCTs, but anecdote-based-medine has an even worse history of promoting quackery. Also, while there are problems with doctors being dismissive of some symptoms of Lyme and long term-problems...

ME too.... but I've been left feeling deeply cynical about the whole process though. Their response to criticism of those appointed to the committee makes things look even bleaker to me.

Thanks so much for that.

So people who move towards a form of pacing with the aim of feeling better and being able to do more are really doing GET? I think that the definitions are difficult here. To me, an important distinction is between a therapist led approach, where it's assumed that someone paid to manage...

There are lots of people to oppose, but so few to support!

I hadn't really understood why Edwards was referencing the Bilko episode where they're trying to beat records for inducting new recruits... but surely that's the only chimpanzee episode that really matters?:

It was a transcript of a recent podcast that gave me that impression. Maybe these notes: https://www.s4me.info/threads/rsm-the-nhs-at-70-podcast-episode-8-prof-sir-simon-wessely-the-challenges-for-mental-health.5568/#post-100724 There was a bit about not talking enough to those they...

I feel like Wessely was starting to try to find a cautious retreat, acknowledging that maybe he was a bit too dismissive of patients' concerns. Then there was an indication Cochrane might withdraw their exercise review, and that led to them decided that they wanted more of their smearing of...

Matthees had compiled comments from PACE trial participants for his tribunal case, so the comment could be in there (although many more have been posted since then)...

It's so hard to get accurate info on prevalence when there are still legitimate controversies about how CFS should be diagnosed. The male/female divide is less stark here than in some other studies, which is a bit interesting.

Yes, but we still don't get biological measures of immune response immediately as infection begins.

I think it was justified to try to make use of funding for CFS to look at the side effects of interferon alpha, as that provided a convenient sample of people they could look at in a controlled way. Ideally they'd be able to do this sort of research on those coming down with something like...

I'm not so sure about the value of the Canadian criteria (I'm not too sure about the value of any particular criteria at the moment) but this sounds like a positive step. Thanks for letting us know.

In some ways, the hype seeming to go against prior views could be seen as a reassuring thing?

Getting to the truth is the most important thing. Any attempt to have lower standards for research that might be of some short-term political value is likely to hurt patients in the long-run. Thanks from me for the blog. The media push makes the problems with the paper more worrying too imo...

I shouldn't really comment on the internal politics of Australian ME groups when I know so little, but there can also be problems with larger groups. Wasn't one of the larger groups supporting that video-game exercise trial that seems likely to do more harm than good? In the UK I think that...