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Some posts have been moved to: Ideas for a Declaration to raise standards in evidence-based medicine

I think Professor @Brian Hughes is someone well informed and who writes well on this subject in books, blogs and published papers. I don't recall whether he's had a paper published in a prominent journal specifically about this problem. But he's a psychology professor, not a clinician. As far as...

Well done to the Sheffield group - if they can hire a director, they are clearly a well organised group already.

If the problem of unblinded trials with subjective outcome measures were really examined and eliminated by all medical and psychological research bodies, then I suspect a large part of psychological medicine would have to be scrapped as having no evidence base. I think the problem is partly...

If I remember its content correctly, I think Jonathan Edwards' Expert Testimony to the NICE ME/CFS review covers this well: https://www.nice.org.uk/guidance/ng206/documents/supporting-documentation-3

I remember some years ago the MEA produced an index of Charles Shepherd's medical articles across years of MEA magazines, with the idea people could dig out the relevant magazine to find the relevant article. So there is an assumption that many people do keep back copies. I didn't.

I suspect it's not so much what is it about Covid that triggers ME/CFS, as what is it about any viral infection that triggers ME/CFS. A lot of other viral infections don't as far as I know do anything specific about oxygen/hypoxia. There's no particular reason I can see to assume that's the case...

Isn't the problem that the actual minutes of the meeting haven't been made public, including a copy of the new Articles of Association, and presumably some sort of explanation that was given to members on why they are encouraged to vote for the change. Specifically some explanation to members...

I quite often microwave in a mug rather than using the kettle.

I thought the MEA research fund was intended for biomedical studies. Epidemiology seems a poor choice, especially now with such variation likely depending which Long Covid people being included. And how the clinical toolkit one got funded beats me. I'd also like to know why they are planning to...

Some quotes: So not 'randomly assigned to the treatment'. They were paying customers, not research subjects. So most very short duration of Long Covid, therefore with a high probability of getting better anyway. No idea whether this might be relevant to patients feeling better after the...

Recent ones included a fully online one due to the pandemic in 2021 and 2022. Some of us on the forum attended the 2022 one free as officially sanctioned reporters and wrote up quite a lot of the talks. IACFSME 2022 Virtual Medical Conference: Day 1 Workshops: 27 July (9 am to 5 pm EDT) I found...

Basically it seems they did a series of telephone interviews spread over a few months, not recorded, with the interviewer asking prompt questions and taking notes. The interviewer then wrote it up from their notes and the pwME/carer made changes. There's an awful lot of pseudo academic sounding...

I don't know how accurate the Vivosmart is on sleep, but my series of Fitbits over the years have all been completely crap at working out when I'm asleep, telling me I'm sleeping when I'm lying still listening to an audiobook, and telling me I'm waking multiple times through the night when I'm...

Er, what behavioural aspects?

I earlier commented that ME/CFS Science might sound too much like Science for ME. I said I would consult the committee. There were no objections, and since we think your blogs are excellent, if someone did associate your blog with S4ME that would be a bonus from our point of view. However, as...

If they were randomly assigned to the treatment, that implies another group were not assigned to the treatment. I see no mention of them in the abstract. Were they a control group?

@bicentennial I don't understand your post. Can you give a link to the information about the ME Society?

I think it's possible Neil Riley has done some very useful work over the years behind the scenes for the MEA. But nobody can be good at everything, and in my view he is unsuited to the public facing roles he currently holds, including writing for the magazine and dealing with complaints. Times...

I had to look that one up. Seems to be a synonym of sceptic.