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Same. It's quite good I think. Of course it is vague, but I like that it covered not only being able to do housework or work, but how well you can do it and how fast you can do it. There's the problem of the variability of ME/CFS, that I could be functioning well one hour and curled up on my...

Having worked through things with others for a regional guideline in my country, my view is that medical guidelines for ME/CFS should note the debilitating nature of ME/CFS and the resulting need for support. Here, where there is no specialised care for ME/CFS, the first line of support should...

The forum's member's page says that it is @dave30th's birthday today. Happy Birthday David, may you have many many more.

(CARP) Umm, how many times has building an aeroplane while flying it at the same time been a good idea? The Dubbo post-infectious study showed that most people recover in the weeks after an infection, without any intervention, with good rates of recovery even after 6 months. It seems very...

Just wanted to point out that the quality of the acronyms is really slipping. I guess ReapSac didn't have the necessary positivity, but taking the G out of 'psychological' smacks of desperation.

Reading through that review summary, it's a pretty searing indictment of the quality of research across the board, even if the conclusion doesn't say so. What a lot of time and money wasted.

Unravelling intracellular immune dysfunctions in chronic fatigue syndrome: interactions between protein kinase R activity, RNase L cleavage and elastase activity, and their clinical relevance Mira Meeus 1, Jo Nijs, Neil McGregor, Romain Meeusen, Guy De Schutter, Steven Truijen, Marc Frémont...

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0078693 open access

Excellent find, Esther12.

Mentioned in this thread Differentiating post-polio syndrome from myalgic encephalomyelitis and chronic fatigue syndrome, 2019, Jason et al Richard L. Bruno, HD, PhD, et al. American Journal of Medicine,1998, 105 (3A): 66-73...

The link is to a book review of this book: Murthy, the reviewer, concludes: All good things to do, but the assumption on the part of the reviewer is that there will be a mental (ill-)health tsunami, rather than, or alongside, a tsunami of post-infectious physical ill-health.

(Cross-posted with Trish - a similar idea.) I share your frustration @Snow Leopard. It's ridiculous what passes for research much of the time. I know that you could do better. It's hard to come up with ideas, not knowing how much time you might be able to commit. I don't even know how much...

I'm pretty happy with those projects - at the very least no CBT, or analysis of predisposing personalities, or investigation of whether an online samba dancing protocol will get those ME/CFS patients moving. Sadly A$3 million doesn't go far. Some here might be disappointed to see Griffith...

Thanks @Simone, it's been on my list to write letters to the various funders. It's still on my list. Maybe we can collaborate on something?

I thought this was an interesting commentary from a US doctor routinely dealing with Covid-19 cases: https://www.rnz.co.nz/national/programmes/checkpoint/audio/2018767179/what-next-for-trump-with-covid-19-us-doctor-explains

Just to clarify, this thread is about a 2017 paper evaluating outcomes in nearly 1000 patients in NHS CFS clinics. Tom Kindlon referenced the paper when responding to recent claims by Alastair Miller about the efficacy of the clinics.

Posts about a medical issue following Covid testing have been moved to the biology thread The biology of coronavirus COVID-19 - including research, vaccines, treatments

@Tom Kindlon mentioned this 2017 paper here: Dr Alastair Miller's misleading claims about effectiveness of the English NHS (rehab) ME/CFS clinics, Royal Society of Medicine webinar in Sept '20

Only 30% of former patients provided followup data in the 2 to 5 year period. Of that 30%, 85% said yes, they were still suffering from ME/CFS and another 9% weren't sure. Only 5.7% said 'no, I'm not still suffering from ME/CFS'. I would have expected a much higher recovery rate just from...

Abstract Background NHS specialist chronic fatigue syndrome (CFS/ME) services in England treat approximately 8000 adult patients each year. Variation in therapy programmes and treatment outcomes across services has not been described. Methods We described treatments provided by 11 CFS/ME...