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

Nightsong

Nightsong

Senior Member (Voting Rights)
"Boost in support for patients with chronic fatigue syndrome or ME" (Gov.uk):

Link

"Doctors to be trained on ME in NHS plan to transform care" (The Times)

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"My daughter died from ME. This new plan fails her and others like her" (Sean O'Neill, The Times)

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"Government pledges to 'transform care' for people with ME" (Yahoo News) - Link
"ME care reforms promised after woman's tragic death" (The Independent) - Link
 
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Action for ME​

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❗️
DHSC publishes the Final Delivery Plan on ME/CFS
The Department of Health & Social Care has published the Final Delivery Plan on ME/CFS.
We have issued a detailed statement on our website
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https://www.actionforme.org.uk/dhsc-publishes-the-final.../
The Plan’s release is an important step towards recognising the scale and seriousness of the condition and we welcome the Plan and the intent behind it.
We would like to thank everyone who has worked hard to produce the Plan and recognise the commitment that many have shown to its publication, including members of the ME community who used their time and energy to input into the wider consultation.
Whilst there are elements of the Plan that will have a positive impact, it simply does not go far enough to ensure that its desired outcomes will be achieved. In particular, the Plan lacks a strategic approach to research investment, ambition, and accountability structures.

Statement by Sonia Chowdhury
"We appreciate the time DHSC has put into the Delivery Plan and their engagement with us and the ME community, many of whom have given up their limited energy to contribute to its
development. We welcome actions included in the plan to redress stigma and improving training of professionals. It's imperative to improve access to health and social care services for people with ME, and this is a good start. We particularly welcome a commitment to explore a specialised
service for people with very severe ME.
However, the plan simply does not go far enough. We are at the stage now where we need more than rhetoric, we need to take a strategic approach if we want a different outcome. What is
proposed in the plan will not offer this. Once again, it feels like people with ME have been
ignored.
Sonya Chowdhury
Chief Executive, Action for ME
 
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❗️ DHSC publishes the Final Delivery Plan on ME/CFS

The Department of Health & Social Care has published the Final Delivery Plan on ME/CFS.

We have issued a detailed statement on our website

www.actionforme.org.uk

DHSC publishes the Final Delivery Plan on ME/CFS - Action for ME

The DHSC has released the Final Delivery Plan on ME/CFS. Read our detailed response to the actions laid out in the Plan.
www.actionforme.org.uk www.actionforme.org.uk

The Plan’s release is an important step towards recognising the scale and seriousness of the condition and we welcome the Plan and the intent behind it.

We would like to thank everyone who has worked hard to produce the Plan and recognise the commitment that many have shown to its publication, including members of the ME community who used their time and energy to input into the wider consultation.

Whilst there are elements of the Plan that will have a positive impact, it simply does not go far enough to ensure that its desired outcomes will be achieved. In particular, the Plan lacks a strategic approach to research investment, ambition, and accountability structures.

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #FundThePlan
 
Very disappointing but not at all surprising. This pathetic delivery plan makes the DecodeME results all the more important. If they are as positive as I’m hoping the delivery plan may become largely irrelevant.

Nightsong said:
"Doctors to be trained on ME in NHS plan to transform care" (The Times)

Link | Archive.ph | Txtify | PrintFriendly

"My daughter died from ME. This new plan fails her and others like her" (Sean O'Neill, The Times)

Link | Archive.ph | Txtify | PrintFriendly
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Thanks for sharing the links. Good report in The Times, apart from the reference to “chronic fatigue” in the sub-heading (which would have been written by the sub-editor not the authors of the report).

Excellent commentary by Sean O’Neill.
 
When my capacity allowed I attended a number of these meetings as a patient rep from DecodeME. Unfortunately it became obvious very rapidly it was a complete waste of my energy and time and unfortunately my assessment seems to have been proven correct.
 
It's looking like we've been sold down the river again.

Three years and we get some lousy NHS education modules and £200,000 NIHR funding — not even enough to fund a single trial.

I feel sorry for all the patients who have put their energy and time into this. I left the CMRC/MERC PAG when this project started because I knew I wasn't well enough to attend these meetings. I'm glad I didn't waste my energy.
 
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InitialConditions said:
Still can't find the actual report. All I can get is the press release (with an awful typo in the lede).
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Quite impressive levels of administrative sloppiness. Hardly the most important part of this but it does seem indicative

Boost in support for patients with chronic fatigue syndrome or ME​

Better care for patients living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, with plans to invest in research and offer closer to home.
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Source
 
Letter received via email sent to all members of the 'Task and Finish Group' from Ashley Dalton MP, Parliamentary Under-Secretary of State
for Public Health and Prevention

Dear all,
Publication of the myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)
final delivery plan

I am pleased to inform you that today we are publishing our ME/CFS Final Delivery Plan.
I would like to take this opportunity to thank all members of the ME/CFS Task and Finish
Group for all your valuable support and collaboration throughout this process, including on
the Interim Delivery Plan and, the 2023 consultation and, more recently, the four meetings
that took place from January to April this year. The input you have provided, including
personal experience from a patient and carer point of view, has been invaluable, and is
appreciated by Ministers and the policy team.

As you will be aware, the responses to the ME/CFS consultation, along with continued
close engagement with stakeholders including the Task and Finish Group, working across
government, the NHS and beyond, has informed the development of the ME/CFS Final
Delivery Plan. The plan focuses on boosting research, improving attitudes and education,
and bettering the lives of people with this debilitating disease. It also sets out a series of
actions, which will help address the key challenges and drive forward improvements to
outcomes and quality of life for people living with ME/CFS in England.

People living with ME/CFS often face stigma and misunderstanding, stemming from a lack
of awareness and education about the condition. This lack of awareness and understanding
can significantly impact the quality and availability of services and support for those
affected.

Research too will be particularly important in helping to improve understanding of the
condition, informing improved diagnosis, the development of new effective treatments and
better support for patients. In this respect, the plan sets out a long-term vision for a
coordinated, well-funded, and inclusive research environment that reflects the complexity
and severity of ME/CFS.

On education and awareness, the plan commits to increasing knowledge of ME/CFS
among public sector professionals, as well as the wider public, by ensuring that information
and learning resources are up to date, publicised and signposted.

Through a range of actions, the plan also commits to: improving the quality and accessibility
of health services and adult social care; appropriate and timely support for children and young people in education; and helping people with ME/CFS to find and maintain employment.

We have a clear commitment to ensure that people with long-term conditions like ME/CFS
can live as independently as possible and see their overall quality of life enhanced. This
plan will help us take an important step towards achieving this. We have listened very
carefully to you, and we acknowledge there is more to be done. We will continue to build
on the foundations of these actions well beyond the publication of this plan.

The publication of this plan marks the beginning of a journey ahead to bring about real and
positive change to the ME/CFS community. I look forward to continuing our collaboration
and hope to have your continued support as we move forward into the vital implementation
stage, and work to deliver on the actions set out in the plan.

Yours sincerely,
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Letter also attached as Word document.
 

Attachments

The 2002 chief medical officers report was The foundation. I’ve lost more than half my life in bed, and all the supposed best years are over , they can **** off with talks of beginnings. We are way beyond first step territory now but the fact our charities have no justice agenda for the severely affected and The harmed and don’t apply pressure via campaigning, in contrast to the other scandals currently in the news - infected blood, waspi women , post office is afaic to blame. W e have leaders who chose collaboration with an establishment that ill serves us. Use of Chronic Fatigue syndrome helps Them to downplay the seriousness of the illness they are failing.
 
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