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?
 
It has just occurred to me that between BACME and ForwardME, people with ME/CFS aren't really getting anywhere.

(No doubt many of you were much quicker to make the connection between the organisation names and backwards and forwards. I hadn't got past BACME possibly alluding to their members 'backing' people with ME/CFS. I wonder if the name ForwardME was a reaction to the BACME acronym?
 
Hutan said:
It has just occurred to me that between BACME and ForwardME, people with ME/CFS aren't really getting anywhere.

(No doubt many of you were much quicker to make the connection between the organisation names and backwards and forwards. I hadn't got past BACME possibly alluding to their members 'backing' people with ME/CFS. I wonder if the name ForwardME was a reaction to the BACME acronym?
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Shall we set up “Support ME” next?
 
The Forward ME response/attitude is No Different to the pathetic Charity responses from 15/20 years ago.


We Do Not Have The Time for more of those Complacent and Compliant so-called Representations from our so called Charities and Orgs (ie Forward ME and MEA)'.

.
 
Nightsong said:
Perhaps there might still be scope for DHSC to be forced to change trajectory if a number of MPs start raising awkward questions in Parliament as to why they are only consulting people who are very much part of the problem and not part of the solution. (I hear AfME have a network of "Parliamentary Champions" - what is the point of them if not for situations such as this?)

I would greatly prefer that the process was derailed entirely rather than accept a result that awarded more funding, power and resources to BACME members and other psychobehaviouralists & rehabilitationists, entrenching them yet further.

MEA and others keep focussing on NICE compliance, to our detriment. The charities' wholehearted, unqualified welcome of that guideline was and remains a very serious tactical error. They now seem to be labouring under the illusion that they are arbiters of NG206 rather than organisations set up to represent patients' interests regardless of what any guideline might say. And they - and all too many ordinary patients - either have not read the guideline properly or have an unusually rose-coloured view of what it actually recommends. By uncritically embracing everything it contains they have allowed our opponents to portray it as some kind of activists' charter rather than the messy compromise that it actually was. Their approach to this really needs to change.
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1. Petition against current DHSC NHS E leads approach to their Obligations under Equalities Act 2010?

2. Ask why severe ME was EXCLUDED from NHSE Specialised Services Commissioning Stream when reviewed?


Googled
Duty of Care: Public bodies, including hospitals, have a duty under the Equality Act to provide equitable care, which is particularly relevant for those with severe ME who may be bedbound and require specialized home care.

Severe ME and "Neglect" (Societal/Medical Neglect)
"Normalized Disregard": The term "neglect" in the context of severe ME often refers to a "normalized disregard" for the standards of care, where patients with severe ME are sometimes left without appropriate medical support, diagnosis, or care.

Risk of Harm: In severe cases, patients are at risk of malnutrition and, in extreme cases, starvation due to improper care or lack of understanding of the illness, such as, for example, failing to manage sensory sensitivity.

3. Coroner's Regulation 28 Prevention of Death to be addressed.
 
Nightsong said:
MEA and others keep focussing on NICE compliance, to our detriment. The charities' wholehearted, unqualified welcome of that guideline was and remains a very serious tactical error.

They now seem to be labouring under the illusion that they are arbiters of NG206 rather than organisations set up to represent patients' interests regardless of what any guideline might say.
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I can agree with that.

Nightsong said:
By uncritically embracing everything it contains they have allowed our opponents to portray it as some kind of activists' charter rather than the messy compromise that it actually was. Their approach to this really needs to change.
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But also I am conflicted, because I want to hold these fake arbiters to all those useful parts of the Guideline that these unholy "NICE-compliant" alliances ditched. If fake arbiters are held to the bits they ditched, then their weird service model fails. These are bits I refer to when I say its original wording is the best education.

The Government states that it "expects" the Guideline to be implemented - through local contracts. Initially the Government seemed to keep local service at arms length, passing the buck to local commissioners. But then it took NHS England back in-house.

According to Claire Gerada, NHS England was a politically independent commissioning board, out-sourcing to GPs who got control of local commissioning. And given a massive stake: £6bn (2013). I call that arms-length. Now its back in-house and the Government blew its arms-length out of the water when it also undertook to:

- centrally model a segregated service for severe ME/CFS - work in progress

- centrally model a segregated service (contract) for mild and moderate ME/CFS - done

This contractual service model was distributed to all local commissioners. The central NHS expects that outsourced GPs can adapt and use its central model, to contract a segregated service for people with mild and moderate ME/CFS.

A central model only adapted to local needs and budgets. Government did not trust the local commissioning GPs to get it right. Wow. After all that delegation. It emerged that Government had a massive say in defining local services. But it still struggles with its oddly aquired notion to exclude informed patient stakeholders.

I remain uneasy about the NICE-recommended ME/CFS reviews, if the current system gets hold of that bit. But NICE-compliance cannot be cherry-picked by any side of the artificially protracted divide. It does seem this Guideline is what we have to use. It might even preclude its own inconsistent bits.

Dr. Paul Chrisp, when Director of the Centre for Guidelines, insisted that the Guideline conclusively resolved all divides. I believe that. The other side of the divide still insists on cherry-picking its provision & compliance - to drop tabu bits they cannot co-exist with, nor speak of. On the other hand we dare say which bits don't consist.
 
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Suffolkres said:

NICE roundtable Minutes

NICE has produced Minutes from the roundtable discussion of 18th October which led to the publication of the new guideline 'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management' [NG206]. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue...
www.meresearch.org.uk www.meresearch.org.uk
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Thankyou. I took it that the summary of this minuted discussion referred to the NICE procedure for its own ongoing involvement in the implementation after the guideline is completed. Quoting from the 18.10.21 minutes of the roundtable NICE held, shortly before the final Guideline publication:

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9. Summary of discussion and any other business: Gillian Leng thanked everyone for a very helpful and productive discussion and added the following summary:

• Clear that issues around commissioning of services needs to be addressed.
• Training materials could help with implementation.
• Examples of good practice from the patient perspective would be a positive step.
• NICE will work with system partners and stakeholders on these.

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  • "There was agreement that personalised exercise plans have a place for people with ME/CFS that want to undertake them."​
Made it optional - not the core service still being traded. How many local people want a personalised exercise plan? Is any local commssioner asking? What did the national consultation and the national audit discover on this level of demand? And Action4ME's survey?

Can central and local NHS government continue to exclude informed patient stakeholders from its contracting consultations with all the other stakeholders? And invent a local demand? Do all local patients want core clinical services to provide everyone with a personalised exercise plan, as assumed?
  • "The group discussed the potential impact of the guideline on commissioning and delivery of services. There was acknowledgment that delivery of individualised plans can take time."​
Yes, I doubt it can be shrunk into the MEA app, even as a fringe minority option. Especially as the Guideline insists the patient must be allowed to use their own words. PROMS won't allow that. Service as proposed by the market traders appeared to put exercise plans at the core. And also dispensed with the ongoing specialist team service recommended.

The MEA website makes its laudable trade proposal for NICE-compliance, in Scotland, but overlooks all the NICE-compliant, ongoing, specialist team service.
  • "There was discussion around the meaning of specialist teams and services for ME/CFS. ,.."
  • "NICE will also look at the recommendations on specialist teams with a view to improving clarity..."
  • "The group talked about the importance of listening to patients and their families about harms, especially considering the Cumberlege review."
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Current Guideline NG206: Box 3 ME/CFS specialist team:

"Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS.

"They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics)

"as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.

"Children and young people are likely to be cared for under local or regional paediatric teams that have experience of working with children and young people with ME/CFS in collaboration with ME/CFS specialist centres."

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I take it that: the core of doctors, in this model, can access the fringe of therapists, as and if and when needed. These therapists became optional features of the product. The doctors were returned to the core. And maybe the exercise physiologists listed as "other" with the other therapists - are not medically trained in rehabilitation medicine.
 
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