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I think we should go for quality rather than quantity. Focus on central issues such as defining PEM including differentiating it from other forms of exertion induced symptoms, explaining pacing and common strategies and problems, and why variations of GET such as pacing up are unevidenced and...

I disagree. We're trying to get away from diagnostic criteria such as Fukuda and Oxford that don't require PEM.

That was the plan, but it was always within strict paramaters directed by Cochrane. The IAG was to advise the review writing group and give feedback on the draft protocol, and the IAG was to set up a public consultation on the draft protocol. As far as we know, the only consultation that...

Perhaps a useful starting point would be to ask members to put forward existing resources that they think are particularly accurate and helpful. No point reinventing the wheel when there is undoubtedly good stuff out there.

We also have the read only Library subforum. It's not had any work done on it for a few years, so needs a clear out and update, but could easily be revived if there are volunteers to manage it.

Crossposted with Hutan. I think the think tank idea is an idealised version of what some of us hoped S4ME could provide. We hoped to provide a space where pwME, carers, scientists and clinicians would come together to learn from each other and be a catalyst for better research, advocacy...

Given that important documents like minutes of AGMs and the associated voting documents sent out to members are and probably were 10 years ago stored both online and on paper, I can't imagine anyone at the MEA being tasked with systematically deleting everything as soon as it's over 10 years...

I wonder whether pwME finding oral rehydration salts useful could be related to low blood volume which I think some research has found.

I was curious about the need for glucose in oral rehydration therapy. Here's what Wikipedia says about the need for glucose to accompany the salt. (I've bolded a couple of bits) https://en.wikipedia.org/wiki/Oral_rehydration_therapy Physiological basis Fluid from the body enters the...

Since in my letter I made a series of suggestions for action, rather than asking questions, I don't expect a quick response to my letter. I await developments.

An admin person has acknowledged my letter that she's passed to the trustees. For her full response see this post: https://www.s4me.info/threads/open-personal-letter-to-the-trustees-of-the-uk-me-association-december-2024.41894/#post-576716 In her reply she says:

Having failed to reach a couple of the trustees directly, I sent my letter to the admin email and asked for it to be sent on. I have received this acknowledgement: Dear Trish Thank you for your email. I have passed this on to our Trustees. In the last few weeks, we have experienced a large...

They probably do. I think I recall the have jointly funded some research.

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...