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

Hutan said:
I'm sorry to be negative, but Dr Luis Nacul heads up a service in Canada that is a long way from what we would want a specialist ME/CFS service to be. We've discussed it elsewhere on the forum. The service promotes unproven therapies including Graded Activity Therapy (it's just not called that).

I hope it goes well.
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Dr Nacul left Canada early 2025.
He is firmly back in the UK
 

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Jonathan Edwards said:
No, the general lay public. This is a general issue about governance of medicine.
But I am beginning to realise that most of the advocates for people with ME/CFS who get the chance to interact with government are not prepared to challenge lots of things they should. That is how we got to where we are with the Delivery Plan. Even charities have to look as if they are doing something positive and that creates conflicts. Fortunately there are people like Suffolkres who will never be trampled on.
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I am but one of a focused single minded dedicated team here in the Eastern Region!
How our severely affected have kept going is a small miracle...... and some have died along the way. Brian Bungay, Dan Norfolk, Tony Norwich, to name but a few.

It's been that fantastic collective spirit and some exceptional NHS Commissioning staff over 2 decades that have empowered us so we were not trampled over.
 
Suffolkres said:
ME Local Network are becoming an effective voice
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I know very little about them, tried a search and found broken links, any pointers to who they are, how to contact them and work with them if you’re just an individual? The thread here talks about contact if you’re a group leader, what if there are no groups of any use near you?

We could do with organising to work for better services, but, how?
Suffolkres said:
Whatever the DOH decide, realistically with current pressures and constraints , you are looking at 4 to 5 years negotiation - as NHS Commissioning grinds so slow, especially in the current constrained climate, redundancy.
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That just isn’t feasible for many of us. Much as we’d like to, we need representatives doing this.

Edit: just to clarify, all these questions weren’t meant to be directed at @Suffolkres although any insight is ofc v welcome, more they were in general and thinking out loud on how we can organise, how we can get charities or ideally others who are supposed to be representing our interests do so.
 
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hotblack said:
I know very little about them, tried a search and found broken links, any pointers to who they are, how to contact them and work with them if you’re just an individual? The thread here talks about contact if you’re a group leader, what if there are no groups of any use near you?

We could do with organising to work for better services, but, how?

That just isn’t feasible for many of us. Much as we’d like to, we need representatives doing this.

Edit: just to clarify, all these questions weren’t meant to be directed at @Suffolkres although any insight is ofc v welcome, more they were in general and thinking out loud on how we can organise, how we can get charities or ideally others who are supposed to be representing our interests do so.
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Simply, you can't!
Look at AfME under Chris Clarke.
Or Peter Spencer .... AfME
Or AYME under MJ Willlows......
With Esther Ransom in tow...

Or currently paid staffers in MEA ...

(except for CS, who helped us counter the crap in ICB 2022 to 2024 early on.....and for whom I have the greatest admiration lasting for some 27 years.
 
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Suffolkres said:
I am but one of a focused single minded dedicated team here in the Eastern Region!
How our severely affected have kept going is a small miracle...... and some have died along the way. Brian Bungay, Dan Norfolk, Tony Norwich, to name but a few.

It's been that fantastic collective spirit and some exceptional NHS Commissioning staff over 2 decades that have empowered us so we were not trampled over.
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May their memory be a blessing
 
hotblack said:
any pointers to who they are, how to contact them and work with them if you’re just an individual?
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I set up ME Local Network (MELN) in 2021. It is a national network of local support groups of people living with ME/CFS. We now have 32 member groups nationally and are members of ForwardME, the DHSC Task and Finish finish group for the ME/CFS Delivery Plan and the steering group for ThereForME

A website is in progress, and we have had discussions about how people can get involved if they don't have a local group, which I think is related to getting the websites set up.

I have not been able to attend a group meetings for a few months so am not up to speed where we are on both of those things.

You are welcome to PM me and I can direct you to our admin.

Hope this helps?
 
Thread here about a FOI request by @Lucibee showing pitiful numbers of NHS staff taking the ME/CFS Delivery Plan e-learning courses.
skyview.social

A BlueSky thread by Lucibee on Skyview

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 1/n
skyview.social

Twitter link here:
 

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I spoke to a kind, sympathetic and helpful GP today. We were talking about the need for physician-led ME/CFS services. I asked her if she has ever had a patient come back from her local ME/CFS service saying how helpful it was. She hasn’t.

Surely most GPs must have the same experience. Why do so few seem to get it?
 
Robert 1973 said:
I spoke to a kind, sympathetic and helpful GP today. We were talking about the need for physician-led ME/CFS services. I asked her if she has ever had a patient come back from her local ME/CFS service saying how helpful it was. She hasn’t.

Surely most GPs must have the same experience. Why do so few seem to get it?
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sadly there is an almost complete lack of curiousity with medics
 
Those FOIed completion numbers are dire. Back in July the BMJ reported (link) that RCP had agreed to promote the e-learning modules; clearly that has not occurred.

I recall my old GP (one of the few genuinely sympathetic ones I've ever met; now sadly retired) openly advised me never to seek a referral to the local NHS CFS clinic, which was run by a psychologist intent on 'demedicalisation'. He, too, had found that no pwME were remotely satisfied with it. And a few months ago there was a PulseToday article (link) in which the GP author wrote that of the patients he had referred to such a clinic not one returned satisfied.

While NHS leadership & those advising the Royal Colleges are almost entirely committed to the psychobehavioural approach, I get the distinct impression that many ordinary GPs would be fine if the clinics were replaced with ones focussed on medical & other supportive care if that led to greater satisfaction among patients. What they would undoubtedly object to is the dissolution of existing clinics with no replacement in a way that left them with no referral pathway.
 
Nightsong said:
What they would undoubtedly object to is the dissolution of existing clinics with no replacement in a way that left them with no referral pathway.
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That makes sense to me. They have patients who want support and their job is refer people to the correct pathway so that’s what they do. I’m not sure there’s a widespread ideological belief in general practice beyond that.
 
Ironically, as awful as those numbers are, they are higher than I would have guessed.

Shifting from complete systemic failure doesn't happen by asking "pretty, please" nicely. Never has, never will. This will take courage and leadership, and although I'm sure this occasionally happens, I have not once seen that out of health care. It will take a major shift in attitudes and culture, as big and visceral as going from total discrimination on the basis of sexual orientation to one where it's never an issue.

This isn't scientific, technical or professional, it's entirely a human problem, as much as it is with any other form of discrimination in systems built to incentivized misbehavior and negligence. While it takes leadership and courage here, this is where things are at their worst, a classic "who will lead the leaders?" when the leaders absolutely refuse to do anything but fail.
 
rvallee said:
Shifting from complete systemic failure doesn't happen by asking "pretty, please" nicely. Never has, never will. This will take courage and leadership, and although I'm sure this occasionally happens, I have not once seen that out of health care. It will take a major shift in attitudes and culture, as big and visceral as going from total discrimination on the basis of sexual orientation to one where it's never an issue.

This isn't scientific, technical or professional, it's entirely a human problem, as much as it is with any other form of discrimination in systems built to incentivized misbehavior and negligence.
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Totally agree with this. The culture shift required is huge. I think a scientific breakthrough could cause that change though.

The additional issue is that the problem both involves the negligent, possibly criminal actions of some NHS higher ups and exposes how baseless and dangerous the whole BPS project is. These two things mean the incentive to suppress and hope it goes away it is much higher.

Sadly for them, we're not going away.
 
InitialConditions said:
Thread here about a FOI request by @Lucibee showing pitiful numbers of NHS staff taking the ME/CFS Delivery Plan e-learning courses.
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Thanks to @Lucibee for highlighting this.

How good did we think the e-learning material was? My vague recollection was that it wasn't great, and I'm not sure we've looked at the severe module at all. In which case, the poor completion numbers might actually be a good thing, or at least a neutral thing. I've seen a lot of ME/CFS training materials that are likely to be, on balance, counter-productive.
 
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