1. Training and Awareness for Healthcare Professionals

The Department of Health and Social Care confirmed that:

• A final ME/CFS Delivery Plan was published in July 2025.
• Three NHS e‑learning modules on ME/CFS are now available to improve diagnosis and management.
• The Medical Schools Council and GMC will ensure ME/CFS is included in medical training and the new national medical exam.
• NICE guidance remains the clinical standard for ME/CFS and Long Covid.

2. Research Funding and Strategy

Key points raised in Parliament:

• Government research is primarily funded through NIHR and the Medical Research Council.
• A new funding programme has been launched to investigate repurposed pharmaceutical treatments for post‑infection syndromes including ME/CFS.
• November 2025 saw a joint NIHR/MRC showcase event promoting post‑acute infection research.
• Despite requests from MPs, the Government reiterated that ringfenced research funding for ME/CFS is not standard practice.
• Approximately £1.6 billion per year is invested in health research overall, but only modest amounts have historically gone to ME/CFS.

3. The November 2025 Westminster Hall Debate

Led by Tessa Munt MP, this major debate highlighted:

• The increasing number of people with ME or ME‑like symptoms post‑Covid (estimated 1.35 million).
• Severe ME cases often receive no meaningful NHS care, with some patients facing life‑threatening complications such as malnutrition.
• A lack of specialist services, insufficient clinical training, and widespread stigma.
• Calls for:
  • Significant new research investment
  • National specialist services for severe and very severe ME
  • Better education, social care, and welfare support

MPs from several parties shared case studies of constituents who were:

• Bedbound and unable to tolerate light or sound
• Misdiagnosed for years
• Pushed into harmful treatments such as graded exercise
• Left without urgent care despite critical needs

The Minister agreed to meet with MPs and charities, and confirmed work was underway to explore a specialised national service for severe ME.

4. ME/CFS Delivery Plan (2025) – Key Government Actions

The plan focuses on three pillars:

a) Research

• PRIME infrastructure funding (£845k)
• HERITAGE study (£1.4m)
• Support for DecodeME’s genetic work
• Encouraging wider biomedical research participation

b) Attitudes and Education

• Public awareness programmes
• New NHS training modules
• Work with schools, employers, and social care providers

c) Living with ME

• Developing NHS service specifications
• Supporting children and young people
• Reviewing benefits assessment processes
• Improving guidance for carers

Stakeholder groups, including the ME Association and Action for ME, argue the plan still lacks:

• Clear accountability
• Dedicated funding streams
• Sufficient focus on severe ME
• A national clinical pathway

5. Regional Updates

Lincolnshire and South West London

• Written answers highlight available specialist ME/CFS services in Lincolnshire and ongoing work to improve care in South West London.

Education Sector

• Schools must support pupils with ME/CFS under existing health and equality duties.
• Staff providing care must be trained appropriately.

6. Welfare and Disability Support

Parliamentary discussions raised ongoing concerns about:

• Poor understanding of ME/CFS within DWP assessments
• The risk of harm if Work Capability Assessments are abolished without safeguards
• The impact of benefits reforms on people with variable, energy‑limited illnesses

The Government confirmed:

• Assessments focus on functional ability, not diagnosis
• Guidance on conditions like fibromyalgia and ME/CFS is now under comprehensive review, with external clinical experts assisting
• Further details will follow after the ongoing Timms Review of disability benefits

7. House of Lords Questions

Lords questions focused on:

• The adequacy of NHS care for severe and very severe ME
• Prevention of malnutrition in these patients
• Confirming that NICE guidelines require dietetic assessments and emergency nutritional support
• Government exploration of a specialised national service for severe ME

Summary Conclusion

The November 2025 parliamentary activity shows sustained pressure on the UK Government to improve support for people with ME/CFS. Although progress is being made in training, awareness, research coordination, and early service design, MPs, charities, and patient groups argue the current approach lacks adequate funding, urgency, and specialist provision—particularly for the most severely affected.

The Government has acknowledged these concerns and committed to further engagement, but major policy, funding, and service delivery gaps remain.