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Good idea. Anyone volunteering? I can't see why any medical training materials provided by the NHS should be kept secret.

So not an ME/CFS study, a fatigue study.

What a wonderfully apt image. Thank you.

And there we were four years ago thinking the NICE guideline would make a difference. We've been stitched up yet again. The same therapists doing the same useless stuff and pretending it's NICE compliant, and still no services for people with severe and very severe ME/CFS. I guess we should have...

The constant stream of papers like this and people getting PhD's on the basis of this sort of 'research' is criminally negligent in my view. The supervisors should know that correlation does not equal causation, so should the students. And the whole practice of getting sick people to fill in...

I think it's probably more a case of indifference. The government minister who set it up was from a different political party and had a personal interest in it because of a family member. The current government's actions make it clear that their approach to ME/CFS is more guided by the...

Those octopi clearly need therapy to overcome their false limb beliefs.

I read the article before reading anything about the author. As soon as I got to the bit where he claimed he could diagnose and treat a list of different subsets of patients, I thought, quack touting for business.

I also have been puzzled by who has made the decisions in this process, and why they aren't on the media explaining the plan. Was it all left to a few pwME well enough to participate, some carers, and therapists from BACME, with the final document written by civil servants, or chat-gpt?

It looks utterly ridiculous. They are only taking on one or 2 patients a week, and the patients need to have their own doctor. I suspect they will talk people into spending money on unevidenced biomed. tests and recommend unevidenced treatments for people to try.

Yes, the link takes you to the whole document. This is the list of contents: Contents Ministerial foreword Summary Research Attitudes and education Living with ME/CFS Agreed actions Next steps

Yes, forum member Joan Crawford is involved so there's reasonable hope it will be good. I think we have a thread on it. Can't find it at the moment. This post gives a taster

All those years of busy-work and they end up with clangers like this that are worse than the NICE guideline.

I haven't come across any information about any physician or patient group advising complete bed rest long term. Nor do I believe PG was advised to do so. I'm sure his articles talked about pacing and building into it some rests each day, not staying in bed all day unless crashed and unable to...

Some posts have been moved to: UK Government Delivery Plan for ME/CFS, published 22nd July 2025

Discussion of the delivery plan has been moved to a new thread: UK Government Delivery Plan for ME/CFS, published 22nd July 2025 This thread is now closed.

That's a really good letter, thank you @Grigor.

Some posts about a document, obtained under FOI and influenced by BACME, have been moved to a new thread: UK:'Challenging Harmful and Out-of-Date DWP Training on M.E./C.F.S.' by Sally Callow, July 2025

Is there no end to this persecution of pwME? This is not just disheartening, it's criminal negligence.

I assume this idea of each individual picking 3 activiies as an outcome measure would be for testing a treatment in a trial over a relatively short term, say up to a year. I guess it would be OK for that. I think for longitiudinal studies of fluctuations of the illness over time and in...