Ask your MP to sign the Early Day Motion (EDM) on the Final delivery plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
The ME Association is pleased to see this EDM has been tabled by Tom Morrison MP.
Along with Tom Morrison, LibDem, Cheadle, the EDM is sponsored by Jim Shannon, Democratic Unionist, Strangford; Will Forster, LibDem, Woking; Steve Darling, LibDem, Torbay; Jess Brown-Fuller, LibDem, Chichester & Max Wilkinson, LibDem, Cheltenham
EDM Information
That this House welcomes the publication by the Department of Health and Social Care of the Final Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and:
- recognises the work of officials and the ME community in shaping the plan;
- notes with concern, that the plan falls short of delivering the meaningful change urgently needed by people with ME/CFS;
- further notes the absence of a strategic approach to ME research, including the omission of proposals for a dedicated ME research hub; expresses concern that much of the new funding cited, such as for the PRIME (Patients, Researchers and Industry for Myalgic Encephalomyelitis) project, was already secured through existing competitive processes;
- highlights the lack of sufficient accountability for implementing services and updating medical education in line with the NICE Guidelines on ME;
- regrets the limited attention given to severe ME and the absence of guarantees on specialist care provision;
- and calls on the Government to ensure robust accountability for its implementation, and provide the resources necessary to improve care, support and outcomes for people living with ME/CFS.
Template letter
Dear X,
As one of your constituents, I'd like to ask you to sign this EDM on the Final delivery plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
https://edm.parliament.uk/early-day-motion/64248/final-delivery-plan-on-myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs
For information, the DHSC released the final Delivery Plan on 22nd July 2025:
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-the-final-delivery-plan
ME (myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome), is a multisystemic disease affecting 400K people in the UK and could potentially be around 1.3M people with post Covid ME.
https://meassociation.org.uk/2025/07/prevalence-latest-research-suggests-a-62-increase-on-historic-estimates-for-me-cfs-in-the-uk/
Symptoms include profound fatigue, sleep disturbance, post-exertional malaise, cognitive difficulties and a range of other symptoms like pain, headaches, nausea and intolerance to light and sound.
Please can I urge you to sign the EDM?
Yours sincerely, [Your Name]
Parliamentary Questions
MP Jo Platt (Labour) and chair of the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis has also recently asked the following questions:
Question
To ask the Secretary of State for Health and Social Care, how much funding his Department plans to allocate for research on ME and Chronic Fatigue Syndrome in the next (a) year and (b) five years.
Question
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) encourage research on and (b) support the development of (i) strategic partnerships and (ii) research infrastructure for ME and Chronic Fatigue Syndrome.
Answered on 8th September (same reply to both questions)
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection condition such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), for which research funding is available. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality, rather than designating an amount of funding for a particular condition. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.
The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and to attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including for ME/CFS and long COVID, later this year to stimulate further research in this field.
Further information
- The ME Association: New collaborative campaign launched calling for an ME/CFS, Long Covid and Post-Infectious Disease research platform | April 22, 2025
- GOV UK: Policy Paper: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan | July 22, 2025
- The ME Association’s statement on the Government’s Delivery Plan on ME/CFS | July 22, 2025
- The ME Association: David Tuller interviews Dr Charles Shepherd about the new ME/CFS Delivery Plan | July 29, 2025
- The ME Association: Dr Charles Shepherd interviewed on BBC Radio Scotland about the new ME/CFS Delivery Plan | July 29, 2025
- The ME Association: Parliamentary questions on ME/CFS and Long Covid research funding, and the Epsom and St Helier NHS Foundation Trust service | Sept 8, 2025