ME (Myalgic Encephalomyelitis) – UK Parliamentary Questions and Answers (April 2026 Summary)
This document summarises a series of UK Parliamentary questions and responses from April 2026 regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), focusing on healthcare services, support for severely affected patients, research, and policy implementation.
Specialist Services and Care Provision
The Government’s July 2025 ME/CFS Final Delivery Plan includes a commitment to explore the creation of a specialised service for people with very severe ME/CFS. However, this work has been delayed until April 2027 due to system pressures and wider NHS restructuring.
In the meantime, responsibility for commissioning care remains with Integrated Care Boards (ICBs), which must provide appropriate services for patients at all levels of severity, including those with severe and very severe ME/CFS.
Interim measures are being considered, including incorporating guidance for severe ME/CFS within new service specifications and working with stakeholders to improve support.
Current Challenges
There is concern about the lack of a national specialist service for people with very severe ME and the delay in planned improvements. Several parliamentary questions highlight uncertainty about interim arrangements and accountability for care provision during this period.
Responses indicate that while NHS England provides guidance and oversight, decisions about service provision and funding are made locally by ICBs.
Training and Guidance for Healthcare Professionals
NHS England has developed a dedicated e‑learning programme to improve understanding and management of ME/CFS. This includes specific modules on severe and very severe cases, with some content restricted to healthcare professionals.
In addition, NICE guidelines continue to provide evidence‑based recommendations for diagnosis and care, and medical schools are encouraged to include ME/CFS training.
Continuing Healthcare (CHC)
Eligibility for NHS Continuing Healthcare funding is assessed individually and is not based solely on a diagnosis such as ME/CFS. Data on eligibility rates specifically for ME patients is not collected nationally.
ICBs are responsible for conducting assessments and ensuring fair application of national criteria.
Research and Funding
The UK Government continues to support research into ME/CFS through UK Research and Innovation (UKRI), the Medical Research Council (MRC), and the National Institute for Health and Care Research (NIHR).
- Over £4.65 million has been invested in ME/CFS research since 2020.
- Around £3.2 million has been allocated to the DecodeME genetic study, which has identified genetic differences linked to immune and nervous system pathways
Research efforts focus on improving understanding of the condition and supporting the development of diagnostic tools and treatments.
Overall Strategy and Future Direction
The ME/CFS Final Delivery Plan aims to:
- Improve care and support services
- Increase research capacity
- Enhance education and professional awareness
- Improve the quality of life for people with ME/CFS
The Government and NHS England are working with patients, clinicians and stakeholders to implement these actions, although progress has been slower than originally planned.
Conclusion
While there are ongoing efforts to improve services, training, and research for ME/CFS, significant challenges remain — particularly in relation to specialist care for people with very severe ME. Delays in implementing national services mean that responsibility currently rests with local NHS bodies, with interim solutions still under development.