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

[Trish]

True, but it helps.

Lots of countries besides the UK have a Wessely-like person with power and influence over ME/CFS research, welfare support and medical care, to our detriment.

I think it's an interesting thought experiment to imagine these same individuals, given the same amount of power and influence, if they had decided the biopsychosocial model, rehab, CBT/GET were all wrong 35 years ago, and put their efforts into ensuring the provision of the sort of physician and specialist nurse service we recommend, catering for all severities and focused on enabling sufficient support to enable pacing to reduce PEM, plus insisting on large research funding.

So my idea of Wessely's malign influence currently is partly based on 'what if he and his gang had drawn the correct conclusions from their researches 30 years ago'. How different it would be now.

He or his gang may or may not have had a word in some ears over this latest delay debacle, but his influence is surely there. It has had decades to seep into all corners of the medical Royal Colleges and health politics.

 

[hotblack]

Well put @Trish I guess it’s like the difference between weather and climate when we have a new big storm and how much influence climate had on it.

We cannot and don’t think we should blame a single poor decision on people like Wessely (I don’t think they always have as much power to make things happen at their will as some imply and I especially don’t think conspiratorial thinking helps anyone). But he and other people pushing those ideas absolutely have had an impact on the environment in which those decisions are made, making poor decisions more likely overall.

And that’s how I see our approach in combatting it. We need to shift the environment that these decisions are made in so better ones are more likely. And maybe focus less on individual people, hard as that may sometimes.

 

[Jonathan Edwards]

He or his gang may or may not have had a word in some ears over this latest delay debacle

But you can bet that they will not have missed an opportunity.

'There is a way...' as they say.

 

[Kitty]

But you can bet that they will not have missed an opportunity.

No, and they'll continue trying to press it even when a drug treatment is found, because a therapy that's neither defined nor observable offers unlimited flexibility. "Of course, it was never intended for that ME/CFS."

 

[Nightsong]

From #ThereForME on the DHSC decision -

Briefing: Delays to establishing NHS care for very severe ME | March 2026

 

[Jonathan Edwards]

From #ThereForME on the DHSC decision -

Briefing: Delays to establishing NHS care for very severe ME | March 2026

That covers the ground pretty well. My main reservation would be the suggestion of using private providers, who are likely to be a very mixed crowd. If there is money for commissioning. service it should go in to an academic unit with a research agenda that is fully open to scrutiny.

ME/CFS care needs to be in the mainstream of medicine, not hived off the some murky backwater of private care.

 

[Felis Catus]

Why do they refer to very severe only and not severe, too?

I can understand if their focus is primarily on very severe, in general or in this instance. Just made me wonder what is there for severe who risk becoming very severe without domiciliary care.

 

[Suffolkres]

The problem is that other than Foundation Trusts, most other former Service's have been 'divested' as of 2010, to Community Interest Companies (CICs) who do not meet in public, fo not release minutes and are essentially unaccountable ad providers.

They are not required to respond to FOI unless linked to an ICB contract.

Their individual contracts are subject to KPIs and 'we' patients carers, in Suffolk. are trying to participate engage with our new CIC provider GP Federation. (August 2026 contract for 5 years).
The medical, lead Dr Nacul, of course, has credible links with academia and research.

The question will be as to how much he is able to influence matters within a CIC governance?

 

[Nightsong]

That covers the ground pretty well. My main reservation would be the suggestion of using private providers, who are likely to be a very mixed crowd. If there is money for commissioning. service it should go in to an academic unit with a research agenda that is fully open to scrutiny.

Agreed. The other reservation I would have about their proposals - despite the heavy reservations I have about the guideline itself - is opening up NG206 again. There has been a move towards "living guidelines" in recent years but I was under the impression that any updates would involve the whole gamut of notices and comments and assessments and reviews and consultation periods that are part of any NICE process. The committee would have to agree to reassemble, too, wouldn't they, or a new committee recruited? Might be a bit of a can of worms...

 

[Sly Saint]

So my idea of Wessely's malign influence currently is partly based on 'what if he and his gang had drawn the correct conclusions from their researches 30 years ago'. How different it would be now.

And yet he recently said that if he had his time over he would have approached the 'ME issue' differently (or words to that effect).
Shame they (Wessely, Sharpe and Chalder) don't do it now they have the chance to make amends, rather than constantly regurgitating the same stuff over and over regardless.

 

[Jonathan Edwards]

is opening up NG206 again.

Yes, I and others spent a lot of time looking at this last year. It became clear that NICE cannot just add something to NG206 without an expensive procedure involving reconvening. There is a clear policy not to do that. Perhaps more importantly, it became clear that nothing extra is really needed, since the principles for nutritional support are laid out and can be applied as usual. The real issue is the pressure from the British Society for Gastroenterology to designate 'functional' illness such as ME/CFS as unsuitable for feeding support.

Somehow we need to get people at the RCP to see sense. Lobbying RCP by advocacy groups has centred around getting people to do the e-learning module. I don't see that as having any impact, or even happening, unless there is an understanding at RCP that I completely different approach to ME/CFS is needed.

 

[Nightsong]

I've just had a quick look. There is the NICE surveillance and monitoring process which can lead to an "update" of "topic areas". Whether adding a section to deal with feeding problems would qualify I'm not sure, although it was drawn to their attention in the Prevention of Future Deaths report, which is on the list of safety indicators that can trigger a surveillance review. So can reports from the Patient Safety Commissioner (has anyone ever tried that route?). "Planned changes to the health and care system" is also something that can trigger an update assessment.

Processes and methods for NICE-wide guidance surveillance

NICE - Surveillance reviews

From the manual, s14.3:

The update is developed using the same methods and process as for a new guideline. Updates of some topic areas using the scope of the published guideline use the review questions and review protocols already defined by the existing guideline. However, if the review questions and/or protocols are unavailable, need refinement, or if there is ambiguity in the published guideline, the developer may approach the committee members with topic expertise for advice before starting the evidence review.

Update of topic areas in a guideline are subject to the same level of scrutiny as full updates and new guidelines. The underlying principles of transparency of process and methodological rigour continue to hold. The draft is subject to a consultation period of up to 6 weeks, depending on length and complexity (see the chapter on the validation process for draft guidelines, and dealing with stakeholder comments). The developer should maintain records appropriate for audit (see the section on committee meetings in the chapter on decision-making committees). The usual process for finalising and publishing the guideline is followed (see the chapter on finalising and publishing the guideline recommendations).

Manual: Updates of topic areas in guidelines

In the manual there is also a process for "refreshing" the guideline recommendations (s14.4) but that looks as though it is for far smaller changes than the one proposed.

 

[Nightsong]

So can reports from the Patient Safety Commissioner

Slightly off-topic, but it occurs to me that the extraordinary problems with the NHS clinics for ME/CFS might well be worth raising directly with the Patient Safety Commissioner.

So might the complete absence of safety signal data for non-drug, non-device interventions. The Yellow Card scheme exists for drugs and medical devices but for the kinds of 'therapies' to which pwME are routinely subjected there is nothing.

Not sure if there is any advocacy organisation out there which might try to take that on.