UK Government Delivery Plan for ME/CFS, published 22nd July 2025

IndieRev said:
I wonder what complaining "for all their worth" would look like for a person with ME and what personal impact this would have. The second sentence is naive at best, as evidence suggests the very opposite.
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I think you have to read it in the specific context - ForwardME meetings with government. Not complaining has resulted in the system steamrollering through. The argument was that we had to play things their way because that will get the best results. Fortunately, at this late stage, banging on about severe and very severe seems finally to have woken people up a bit. And the DHSC people actually said they had better do something.
 
Robert 1973 said:
I think someone proposed the idea of an open letter which outlines the type of services that are needed earlier in this thread. I think that might be a good idea.
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Maybe we should have a thread on what people with ME/CFS need in the way of service - with details of practicalities? People can make suggestions and we can try to agree what is realistic.

It might be useful to get input from physicians like Amolak Bansal and Saul Berkovitz who in the past have provided services. Or any other physicians people have been impressed with.
 
Jonathan Edwards said:
Maybe we should have a thread on what people with ME/CFS need in the way of service - with details of practicalities? People can make suggestions and we can try to agree what is realistic.

It might be useful to get input from physicians like Amolak Bansal and Saul Berkovitz who in the past have provided services. Or any other physicians people have been impressed with.
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This is an excellent idea .
 
Jonathan Edwards said:
Maybe we should have a thread on what people with ME/CFS need in the way of service - with details of practicalities? People can make suggestions and we can try to agree what is realistic.
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Yes, maybe split between people who can mostly attend local appointments, and people who can't travel or have such hard hitting after-effects that they avoid seeking care.
 
Jonathan Edwards said:
Maybe we should have a thread on what people with ME/CFS need in the way of service - with details of practicalities? People can make suggestions and we can try to agree what is realistic.
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Here’s the thread that Jo has started:
Jonathan Edwards

Thread 'A thread on what people with ME/CFS need in the way of service'

Well here it is folks. Get posting.

I think they need to be referable to a clinic with a physician in a standard medical speciality (not rehab) for an assessment of their problems with a waiting time of around 2-3 weeks on average.
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Jonathan Edwards said:
These people are not part of ForwardME, they were invited in to the meeting by DHSC.
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yes looks like I'm getting confused by them attending ForwardME meetings etc and I don't know the details of how that interaction/relationship works there that now I look BACME aren't actually members of ForwardME

it would be good to know more detail if anyone is in a position to describe it to 'an outsider' what BACME attends and how that is managed etc ie how that delineates vs other members on that ForwardME side of things if ForwardME is defined as being 'patient-side' so to speak?
 
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