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Oh, and this one. We can expect lots more tortured data analysis trying to suggest that subsets of patients (the ones who are too perfectionist, or too lazy or too fearful or has a mother who is too perfectionist etc) actually have done well with particular flavours of therapy.

What I took away from that article: We will have to keep banging on about the natural course of post-viral fatigue syndrome/ME/CFS - most people recover in the first two years regardless of whether they receive treatment or not. Any statements about the impact of a treatment has to take this...

Just by the way, I know there wasn't much time for feedback on the S4ME draft submission. But there were a lot of great comments on content as well as good pick ups on typos. The people working on the submission did review every comment and things changed as a result. Thanks for making the...

A number of posts about occupational therapy have been moved here: Occupational therapy and ME/CFS

Discussion of a webinar by Bragee about a number of research projects: Sweden: Webinar 'Half-time control' Bragee December 2020

Discussion of a related webinar has been moved to its own thread: Sweden: Webinar 'Half-time control' Bragee December 2020

Thanks very much @mango From the slides, I have the following comments: PROJECT 1 the inclusion of 'exhaustion syndrome' or 'burnout' alongside ME/CFS in studies seems odd. I imagine 'burnout' could be actually many things. A slide says 'Burden of these studied diseases: patients have the...

Moderator note: Several posts have been deleted. Please do not discuss or speculate about the details of an individual's diagnosis or treatment. It is fine to express sympathy and provide information about possible sources of help.

There's the draft NICE ME/CFS guidelines, which include some protections for people with very severe ME/CFS. Maybe they would help give the steamrollering psychiatrists some pause for thought?

Radio New Zealand item: Host of the show called 'The Panel' introduced the item as 'CFS' and said it's not psychosomatic. Warren Tate spoke - mentioned that it typically follows an infectious disease, mentioned that people infected with Covid-19 are developing the symptoms. He referred to...

There's going to be an item on 'Chronic Fatigue Syndrome' on Radio New Zealand in the next hour or so. It was introduced as 'Chronic Fatigue Syndrome has been thought of as being all in the mind, but now some University of Otago researchers have proved that it is very real'.

Thanks MEMarge for the comment and for your work on the response. There was a fair bit of copy/pasting of @Jonathan Edwards' comments and of course it was a team effort.

There has been a recent report of elevated complement product levels in Covid-19: Maybe that's not so remarkable, as it sounds as though complement activation fragments are markers for ongoing immune reactions.

Thanks @strategist. I've made a new thread for that complement product paper in ME/CFS: Chronic fatigue syndrome and complement activation, 2009, Geller, Giclas

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028106/ Chronic fatigue syndrome and complement activation Robert Dennis Geller; Patricia C Giclas Abstract

I'm not sure how reliable that Dubbo finding was. From memory, the baseline testing was done after the onset of the acute illness. In some cases, it was quite a long time after the onset. So, rather than measuring how bad the acute infection was, they may have measured how people were feeling...

It's possible Barry, although we have no evidence that being a couch potato is protective against ME/CFS and pushing on with exercise while in the acute stage of being ill is a risk factor. Given that there is no evidence, I don't think we have to go with that idea. It's more likely that people...

That's kind of you @Perrier, and I agree that it's definitely worth trying to educate Ms Diserholt to at least limit the harm that she does. But, she has already spent what she suggests is a great deal of time interviewing at least 9 people with ME/CFS and thinking about what they said to her...

I think you are wrong on this @rvallee. Manure eventually turns into something really useful given enough time. Whereas this just keeps stinking. It's 2020. It's hard to believe that female predominance can be used as evidence of mass psychogenic illness in a medical textbook. Where's the...