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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. https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Someone-You-Know-has-MS_-A-Book-for-Families.pdf Perhaps we...

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 participants are teachers and school nurses. It's a paper that supports early diagnosis i.e. earlier than 1 year. The paper is very light on concrete...

The Forest Stewardship Council was developed by stakeholders who were frustrated that they couldn't hold bad forest owners to account, and by some forest owners who wanted a way to show that they weren't bad forest owners. My point is that it didn't come from government but, once it was in...

I don't disagree with you that it's frustrating that researchers, and especially researchers deeply familiar with ME/CFS, don't better assess people with illnesses that look a lot like ME/CFS for PEM. They did however exclude people with other obvious reasons for multi-symptom illness. These...

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 selection of reviewers; not listening to the valid concerns of some of the reviewers; not having a proper consultation process; and not listening the...

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 sleep, fatigue and something that could very easily be PEM.

Part of Table 4: Nothing much survived the adjustment procedure, which seemed rather extensive (veterans’ age, rank, PTSD status, and significant deployment experiences/exposures) - just the mild brain trauma during deployment and the extended use of skin pesticides. But there are...

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 recall from something I think @SNT Gatchaman posted that assessing red blood cell deformability is regularly done and that there are existing...

Those are pretty interesting findings on a fairly good sized sample. I thought the incidence of tender points consistent with a diagnosis of fibromyalgia was interesting too. - although I don't know what the significance of tender points is. It's worth noting for future comparisons with...

Having said that, the guideline has a 'NICE' label, so presumably the people ultimately in charge of the guideline are the NICE executives. Perhaps someone there would be open to understanding that it's not tenable for the close relationship between Long Covid and ME/CFS to be ignored much longer?

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 of days to provide feedback given the detailed feedback we had provided for the first draft was so completely ignored. So, that's why we just made a...

The Science for ME submission appears near the end of the stakeholder submissions in 'General'. I've copied it here with formatting added for readability. ************************* Better focus on symptoms not attributable to identified tissue damage. We think the guideline has improved by...

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 the team; they had to fill out a battery of surveys including a self-reported severity of acute illness. I got the impression the time between...

Effects were short-lived. The result did suggest that a significant minority of the patients did well with the hydrocortisone treatment, although the small study size and the poor criteria limit the conclusions that can be drawn. It will be quite ironic if the benefits did suggest something...

That's the Oxford and Fukuda criteria. . The participants' levels of cortisol were normal throughout, but did increase with the treatment. They mention another study of hydrocortisone in CFS, with higher doses: Aside from the selection of patients (did they have ME/CFS?), the study looks to...

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 ME/CFS and Long Covid by Dr Nath and Dr Yamamura. Wessely is an author. Is interesting to read the sorts of ideas he was willing to put his name to...

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 hypocortisolism in chronic fatigue syndrome led us to postulate that low-dose hydrocortisone therapy may be an effective treatment. Methods: In a...

Video - Part 2 Dr Yamamura - what's coming up They are phenotyping (Long Covid?) and are about to publish a paper on gut microbiota - specifically gut microfilms. They are planning a clinical trial targeting B cells, but he said that he can't say more on that. Nath felt that such a trial made...

Referring to the video: Part 1 The President of the Japan ME Association hosted the conversation - Ms Miyako Shinohara (apologies if I have that wrong). She said a little about ME/CFS and Long Covid in Japan - I summarised it on the 'News from Japan' thread. The conversation was between Avi...

Very interesting video from the Japan ME Association with a conversation between Avi Nath and Takashi Yamamura. Link to the thread here: Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al The President of the Japan ME Association...