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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...

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...