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a document, obtained under FOI and influenced by BACME, have been moved to a new thread: UK:'Challenging Harmful and Out-of-Date DWP Training on M.E./C.F.S.' by Sally Callow, July 2025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

I don't suppose pwME will be allowed to attend. I asked last year and they said no. I don't have the capacity to do anything about it this year. I hope others will.

From Wikipedia: A dolorimeter is an instrument used to measure pain threshold and pain tolerance. Dolorimetry has been defined as "the measurement of pain sensitivity or pain intensity". Dolorimeters apply steady pressure, heat, or electrical stimulation to some area, or move a joint or other...

I doubt many are reporting that a single very minor episode led to long term detrioration. Much more often in the cases I've read deterioration that the pwME doesn't recover from occurs after repeated exertion and crashes over weeks or months, with each time their threshold for triggering PEM...

Yes, yes, yes, a thousand times yes. Very well said, hotblack. Edit: I would add that for me the wearable tracking is about making me take more notice of my symptoms and recognise when to stop and to give myself permission to stop. Not everyone needs this.

I think FUNCAP covers this and has the advantage of applying across all severity levels and taking into account whether doing the activity means you can do little else that day or it doesn't affect you. The cumulative effect of activities and their after effects need to be taken into account I...

I think a combination of FUNCAP and a cognitive test filled in every couple of months and a wearable, perhaps worn around the ankle that does both steps and time upright. Have thousands of people of all severity levels do this for several years and there would be such a rich set of data...

Keith Geraghty is named as one of the team with Sarah Tyson producing the MEA clinical assessment toolkit. For more discussion and information on the Toolkit project, go to this thread

I'm trying to get my head around where this project is up to. Here's a copy of information about who is on the team running the project: https://www.s4me.info/threads/uk-me-association-funds-research-for-a-new-clinical-assessment-toolkit-in-nhs-me-cfs-specialist-services-2023.33221/post-535585...