From the AMRC guidance: It looks as though the MEA should publish the names of the experts who were involved in the decision-making process...
Of that I have no doubt. The trustees have a responsibility for putting in place a process that does not fail if one person is distracted or has...
Thank you both. The funding of this PROMs project suggests that the MEA's evaluation system does need improving. There seems to be a relatively...
So decisions about allocation of research funds in the MEA are mostly made by Charles? I would have thought that Charles understood the problems...
Does anyone know the trustees of the MEA? Surely some of them must see the problems with this research? Are the trustees appointed, or elected...
Perhaps some do realise that their research and questionnaires and treatments can cause harm. Surely some realise that their patient may not...
Paul Glasziou seems to be responsible for this Will someone please save us from Professors of Evidence-Based Medicine?...
'Well-washing' did make me think first of miracle water. I googled and sure enough, there are miracle wells. Which sort of also fits with what...
http://www.drvallings.co.nz/management.html Dr Vallings has a website with her curated information about CFS. The national website of health...
Some days this all feels like a very long nightmare.
I note that the capacity of people with ME/CFS to make decisions about their health and accurately report their symptoms is undermined by...
Australia: RACGP: GET for CFS RACGP claim to have updated their guidance on GET for CFS, but it looks to be still completely mired in the dark ages.
Thanks to @Three Chord Monty for noting that the RACGP guidance on ME/CFS has been updated: I've copied the guidance here in full, so we can...
Posts discussing possible terms like 'green-washing' have been moved to a separate thread: What's a term like 'green-washing' for the...
Thanks for the added information Dania Ala. I do feel somewhat reassured after reading the attached files. My sense from them is that the primary...
"UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023" That is a well-established...
That has my vote. I was thinking of 'recovery-washing' as in 'giving the impression of a recovery, when in fact there has not been one'. But...
This paper is from a Madrid team, the Hohberger work is by a Bavarian team. A Melbourne team has been working on ocular function as a biomarker...
More on the UK RCGP Long Covid guide here: UK RCGP helps with supportive LC leaflet for GPs
From another thread:
Separate names with a comma.
