ME Questions and Answers – December 2025

1. Specialist ME/CFS Services and Local Provision

• MPs asked about the adequacy of ME/CFS services in Surrey Heath and Ashfield.
• The Government confirmed the ME/CFS Final Delivery Plan (July 2025) guides improvements in research, attitudes, and care.
• NHS England is developing resources to strengthen services for mild and moderate ME/CFS and exploring the creation of a specialised national service for very severe ME/CFS.
• In Ashfield, support is mainly provided by the Community Pain Management Service, offering multidisciplinary, community‑based ME/CFS care.

2. Research Strategy and Funding

• The Government states it has a strategic approach to ME/CFS research outlined in the Final Delivery Plan.
• Actions include:
  • Research showcase events
  • A new award for evaluating repurposed pharmaceutical treatments
  • New NIHR‑funded infrastructure and capacity‑building studies
• Funding is not ringfenced; research proposals compete through the NIHR process.
• DecodeME—supported by over £3.2 million—has identified genetic differences in eight regions linked to immune and nervous system pathways, which may lead to future diagnostic tests.

3. Support for Children and Young People

• A dedicated public awareness initiative will increase understanding of ME/CFS symptoms.
• NHS England’s e‑learning programme supports professional training.
• Medical schools must teach ME/CFS as part of the new national medical exam.
• Work continues between DHSC, NHS England and the Department for Education to improve early diagnosis, safeguarding, and support for young people with ME/CFS.

4. Diagnosis and Comorbid Conditions

• The Government recognises challenges for patients with overlapping conditions such as ME/CFS, Ehlers‑Danlos Syndrome, Long Covid, PoTS and MCAS.
• The 10‑Year Health Plan promotes integrated, personalised care, multidisciplinary services and digital monitoring for people with complex, multi‑system illnesses.
• NICE guideline NG206 states ME/CFS diagnosis is clinical and should not routinely include tests for other conditions unless symptoms specifically suggest them.

5. Malnutrition and Severe ME/CFS

• Parliament raised concerns about nutrition‑related patient safety risks in severe and very severe ME/CFS.
• NICE guidance recommends:
  • Dietetic assessments for patients at risk of malnutrition
  • Support with hydration and nutrition, including oral or enteral feeding where needed
• The Government is still exploring the case for a specialised national service for very severe ME/CFS.

6. Availability of Specialist Dietitians

• The Government does not hold data on how many dietitians have ME/CFS‑specific expertise.
• NHS workforce statistics categorise dietitians only by profession, not by condition‑specific specialisms.

7. Personal Independence Payment (PIP) and Reassessments

• PIP awards are based on functional impact, not diagnosis.
• Review frequency varies by individual need, with “light‑touch” ten‑year reviews for long‑term stable conditions.
• The Government did not indicate plans to reduce reassessment requirements for fibromyalgia or other lifelong illnesses.

8. Overlapping and Post‑Viral Conditions

• ME/CFS, Long Covid, EDS, PoTS and MCAS often coexist, requiring coordinated care.
• By 2027, the Government intends for 95% of people with complex needs to have a personalised care plan.
• NIHR research into autonomic and post‑viral disorders aims to improve evidence‑based treatment for multi‑system conditions.

9. Industry and Research Collaboration

• Findings from the LOCOME study (over 250 implicated genes and shared pathways with Long Covid) were acknowledged as significant.
• Innovate UK and UKRI promote collaboration between publicly funded and private‑sector researchers to accelerate diagnostic and therapeutic development.

10. Future Research Funding

• Ministers reiterated that ME/CFS research funding depends on the strength and quality of applications.
• The Government intends to continue removing research barriers and expanding capacity, rather than setting fixed funding levels.