What a good question. I found this booklet for families with MS, but I'm not aware of anything similar for ME/CFS. It covers some useful ideas....
The sample is biased towards those who are more likely to be interested in ME/CFS and want to help, but I found it an interesting read. The...
The Forest Stewardship Council was developed by stakeholders who were frustrated that they couldn't hold bad forest owners to account, and by some...
I don't disagree with you that it's frustrating that researchers, and especially researchers deeply familiar with ME/CFS, don't better assess...
NICE's performance on the Long Covid guideline and the Chronic Pain guideline has been less than great - there were various combinations of a poor...
Just by the way, Table 3 gives the list of symptoms, and they look awfully like ME/CFS to me. Here's just one domain , covering unrefreshing...
Part of Table 4: [ATTACH] Nothing much survived the adjustment procedure, which seemed rather extensive (veterans’ age, rank, PTSD status, and...
At one point, Ron was backtracking from the finding in this paper. And then, earlier this year he suggested the work may in fact be correct. I...
Those are pretty interesting findings on a fairly good sized sample. I thought the incidence of tender points consistent with a diagnosis of...
Having said that, the guideline has a 'NICE' label, so presumably the people ultimately in charge of the guideline are the NICE executives....
It's a rapid response guideline, so it's supposed to be updated as needed. Yes Yes, the forum committee felt the same when we had just a handful...
The Science for ME submission appears near the end of the stakeholder submissions in 'General'. I've copied it here with formatting added for...
I found this previous post of mine, which starts to answer the question of illness severity ratings in the Dubbo study. People were referred to...
Effects were short-lived. The result did suggest that a significant minority of the patients did well with the hydrocortisone treatment,...
That's the Oxford and Fukuda criteria. . The participants' levels of cortisol were normal throughout, but did increase with the treatment. They...
I think this old paper is interesting for a number of reasons. I posted it because of the current interest in hydrocortisone as a treatment for...
https://pubmed.ncbi.nlm.nih.gov/9989716/ A J Cleare 1, E Heap, G S Malhi, S Wessely, V O'Keane, J Miell Abstract Background: Reports of mild...
Video - Part 2 Dr Yamamura - what's coming up They are phenotyping (Long Covid?) and are about to publish a paper on gut microbiota -...
Referring to the video: Part 1 The President of the Japan ME Association hosted the conversation - Ms Miyako Shinohara (apologies if I have that...
Very interesting video from the Japan ME Association with a conversation between Avi Nath and Takashi Yamamura. Link to the thread here: Skewing...
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