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

I control + f for «psycho», and this was the only mention:
the British Psychological Society is currently developing a Good Practice guideline for working with patients with ME/CFS based on NICE NG206 (2021) in conjunction with ME/CFS charities and in co-production with patients and psychological professionals with lived experience of ME/CFS. This will include sections in relation to appropriate psychological support in general along with, for example, detailing specific information in relation to working with severe and very severely affected ME/CFS patients and with patients across the life span
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Has this been covered elsewhere?
 
Is this the whole of the final plan?

Policy paper

ME/CFS: the final delivery plan​

The final delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), focusing on 3 main areas to improve care and support for those with ME/CFS.
From:Department of Health and Social CarePublished22 July 2025

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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan​

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This document is the final delivery plan on ME/CFS ( my bolding) and was developed in consultation with a wide range of government, NHS and external stakeholders, including some who will be responsible for its delivery. The content of the plan was primarily informed by the responses to the public consultation on the interim delivery plan, which were carefully considered and assessed for financial feasibility.

The plan focuses on 3 main areas where we are seeking to drive change to improve care and support for those with ME/CFS including:

  • research
  • attitudes and education
  • living with ME/CFS
The plan includes specific, measurable, achievable, relevant, and time-bound (SMART) actions, and the plan includes tables summarising:

  • actions and action owners
  • progress updates (where relevant)
  • measures of success or indicators of progress
  • proposed delivery timelines across the 3 themes
Published 22 July 2025

edit: Link below to full document known as FDP, ( courtesy of @Tao Fogger via @Jonathan Edwards)https://www.gov.uk/government/publi...atigue-syndrome-mecfs-the-final-delivery-plan
 
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Tao Fogger said:
It seems to be published here: https://www.gov.uk/government/publi...atigue-syndrome-mecfs-the-final-delivery-plan
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It is long, but I can't find anything other than expected. They claim credit for PRIME, which Isee as purely down to the hard work of Chris, Sonya and team. The rest is just the usual words, words, words...

The missed opportunity is huge. The one thing that really matters if you want a real research program is a clinic base - at least one and preferably several academic centres with hundreds of cases under long term observation. The plan does the opposite. The Edinburgh experience with UK Biobank has shown just how hard it is to get reliable results without this sort of resource. The drug repurposing idea is unlikely to fly anyway but certainly isn't going to without a well-documented patient base.
 
Jonathan Edwards said:
The missed opportunity is huge. The one thing that really matters if you want a real research program is a clinic base - at least one and preferably several academic centres with hundreds of cases under long term observation. The plan does the opposite. The Edinburgh experience with UK Biobank has shown just how hard it is to get reliable results without this sort of resource. The drug repurposing idea is unlikely to fly anyway but certainly isn't going to without a well-documented patient base.
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@Suffolkres has had a ridiculously agonising and unproductive slog of years trying to get a proper clinic in Suffolk. Is it time for all the charities to join up, choose a suitable location (Edinburgh?) and just start pounding and pounding and never shutting up about it until they get one? And for all of us to pile on to a single parliamentary petition? It shouldn't be left to individual PwME to do this. And I don't see the BACME clinics being able or willing to transform into what we need. We need something independent of the usual rubbish clinics.

Or do we float the idea of using some of the DecodeME cohort as a sort of virtual clinic?
 
ME Association response to the Delivery Plan

The Government’s delivery plan on ME/CFS is aiming to boost research, improve attitudes and education, and enhance the lives of people living with ME/CFS.

We fully support the strengths of the plan which mark an important shift in acknowledging that ME/CFS is a serious and often long-term disabling condition, along with a commitment to several low- or no-cost initiatives to improve awareness, education and research. In particular:

Three e-learning modules and various other actions to improve education and training of all health and social care professionals.
Updating of Department of Education guidance on the education of children
Increasing awareness among people with ME/CFS and carers of the support that is available for social care and how to access it
The development of repurposed pharmaceutical interventions for ME/CFS and other post viral disease
Whilst today’s announcement is an important step forward, there are several key areas where the plan has failed to deliver:

There is no clear ambition or strategy to drive consistent implementation of the NICE guideline recommendations across Integrated Care Boards (ICBs), leading to a postcode lottery in diagnosis and access to specialist care.
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While the final version of the plan does now include some research funding, we need a far more ambitious long term research strategy linked to dedicated funding, that mirrors the way in which research into neglected conditions like dementia have been transformed by strategies such as the Dementias Platform. Otherwise, the majority of biomedical ME/CFS research studies and infrastructure, including the ME Biobank, will continue to be funded by the charity sector.
Severe and very severe ME receives minimal attention, despite known risks during hospital admissions and the issues raised in the recent Prevention of Future Deaths report from the Coroner in the Maeve Boothby O’Neill case.
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The Plan’s Living with ME section focuses heavily on return-to-work pathways, but does not address the fear and distress caused by welfare reforms, particularly looming changes to PIP eligibility.
Some of the NHS website information on ME/CFS update remains out of line with NICE guidance, continuing to reference “extreme tiredness” and listing CBT as a core treatment.
While the Plan references Long Covid in research, it ignores the reality that NHS England has withdrawn funding from many Long Covid clinics, which are now closed or in the process of being merged with ME/CFS services—reducing overall access to care.
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Several of the Plan’s own deadlines have already passed, and it is unclear what progress has been made.
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The ME Association will continue to monitor the plan closely and remain actively engaged with colleagues in the Government’s Department of Health and Social Care (DHSC), and we thank the DHSC team for their commitment and dedication. We look forward to working constructively with the Government to push the plan forward as a priority and ensure that these actions support people living with ME/CFS.
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meassociation.org.uk

The ME Association's statement on the Government’s Delivery Plan on ME/CFS - The ME Association

The Government’s delivery plan on ME/CFS is aiming to boost […]
meassociation.org.uk meassociation.org.uk
 
Well, this could have been an email poop emoji. A delivery plan that isn't a plan and delivers nothing. Such ironic projection. They keep falsely saying those things about us, how we don't even try, and yet it's them who never bother trying.
Cinders66 said:
www.pulsetoday.co.uk

GPs to support delivery of ME/CFS care under new NHS plan

GPs are set to play a role in delivering care for people with mild and moderate ME/CFS under a new delivery plan.
www.pulsetoday.co.uk www.pulsetoday.co.uk
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I think there's a typo here. It should read "GPs to obstruct delivery of ME/CFS care under new plan". Notable that it's filed under "mental health, pain and addiction". Of course.

Interesting comment under the article:
quality care of what nature? if there’s no medical treatment to offer, the involvement of GPs in a non-evidence based non-medical treatment pathway is an opportunity cost
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There are many diseases that don't have any treatment. So what gives? Certainly that comment is broadly correct that this is not a plan, and it delivers nothing, but there are many diseases without a treatment, and although they are certainly managed more poorly than diseases that do, they certainly aren't discarded and the patients sent off to suffer needlessly while making everything about it worse. So why do physicians so often say things like that? And it sure has never stopped anyone from pushing the psychobehavioral pseudoscience with an evidence base that makes it clear it's a complete bust.

The actual plan remains to be seen, but I doubt it matters much. The only appropriate response to this is scorched-earth directed criticism. It's the beginning of nothing, it's yet another cover-up. The same as it ever was: blatant refusal to do anything, while making everything worse for everyone.
 
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The one thing that is abundently clear from this document is that the government and NHS will never become what ME/CFS patients need. We are going to have to rally around the idea of a private healthcare system that contains our experts based on the science patients fund and that is all we can hope for in our lifetimes. The Department for health can hear the suffering and just ignore solving the problems and it was a waste of advocacy.

This plan is appalling, it blames patients for so much of things not working for them and doesn't actual commit to doing anything that could work. We will never get an NHS that is there for ME patients like this, they aren't hearing and its clear its selective and intentional.
 
Sasha said:
Is it time for all the charities to join up, choose a suitable location (Edinburgh?) and just start pounding and pounding and never shutting up about it until they get one?
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The government plan goes in the wrong direction. But the logistics of going in the right direction may be quite complex. When I knew Chris and Sonya were trying to set up PRIME I said that a clinical facility should be included but after some thought decided it would probably be premature. There need to be really good academic clinicians wanting to run such services. I hope that will come soon but just at the moment there are no very obvious candidates practicing in the UK.
 
A word of advice from someone who knows a lot about politics: don't use their language. The plan doesn't aim to boost or improve anything. Never privilege a lie, always call them out when you are dealing with this kind of systematic obfuscation and dishonorable lying.

And do not give credit for intent. The people responsible for this are not ten year-olds, there is no need to encourage them for their intentions, those don't matter one bit. It's outcomes that matter, and only outcomes. This won't change outcomes, and it's a total Dr Magoo bullshit that ignores the entire context and history, how it has been playing out exactly the same way for decades. There have been many reports and studies in the last few decades that make it clear this is a complete disaster, and they are doing nothing to improve on it. In fact this is a complete whitewash.
 
rvallee said:
There are many diseases that don't have any treatment. So what gives? Certainly that comment is broadly correct that this is not a plan, and it delivers nothing, but there are many diseases without a treatment, and although they are certainly managed more poorly than diseases that do, they certainly aren't discarded and the patients sent off to suffer needlessly while making everything about it worse. So why do physicians so often say things like that?
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«I’m sorry, we can’t cure your cancer. There is no reason for you to seek any more medical help. Please stop bothering your doctor.»
 
Jonathan Edwards said:
There need to be really good academic clinicians wanting to run such services. I hope that will come soon but just at the moment there are no very obvious candidates practicing in the UK.
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I keep hoping that will start to change if we find a disease modifier with good trial results for some patients.

There must be good people in related fields whose antennae would twitch if a real opportunity was opening up.
 
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