ME/CFS Parliamentary Questions and Answers: July 2026
During July 2026, a series of Parliamentary Questions raised important issues concerning ME/CFS research, access to specialist healthcare, severe and very severe ME, professional education and the development of future NHS services
ME/CFS Research and Funding
The Government confirmed its commitment to supporting high-quality research into the causes, consequences and treatment of ME/CFS through the National Institute for Health and Care Research and the Medical Research Council.
Recent investment includes £4.75 million for SequenceME, which aims to develop a high-resolution genetic map of ME/CFS and support future diagnostic and treatment research. A further £845,000 has been awarded to researchers at the University of Edinburgh for PRIME, a partnership designed to strengthen biomedical ME/CFS research infrastructure.
Two additional projects have received funding to investigate the feasibility of a clinical trial testing multiple treatments for post-acute infection conditions, including ME/CFS and Long Covid.
The Government acknowledged that ME/CFS has historically been under-researched, although it has not specifically assessed whether current research priorities and funding are proportionate to the overall burden of the illness. [
Unequal Access to Specialist ME/CFS Services
The Government acknowledged that there are significant geographical differences in the availability and accessibility of specialist ME/CFS services.
Integrated Care Boards (ICBs) remain responsible for commissioning services according to the needs of their local populations. Where dedicated ME/CFS services are unavailable, patients are advised to consult their GP, who may refer them to other appropriate services according to their symptoms and clinical needs
Severe and Very Severe ME
Several Parliamentary Questions focused specifically on the lack of appropriate specialist care for people with severe and very severe ME.
ICBs are expected to commission services covering all levels of severity, including severe and very severe ME. However, decisions regarding local priorities and funding remain largely at the discretion of individual ICBs.
The Government and NHS England continue to consider whether a nationally commissioned specialist service should be established for people with very severe ME. A final decision is not expected until after changes to NHS England are completed in April 2027.
Officials have stated that preparatory work will continue in the meantime so that progress can be made as quickly as possible once the NHS changes have been completed
Guidance and Training for Healthcare Professionals
NICE guidance provides recommendations for the diagnosis and management of ME/CFS, including the treatment and care of people with severe and very severe illness.
Although NICE guidance is not legally mandatory, healthcare professionals and commissioners are expected to take it fully into account.
NHS England has also developed a four-module ME/CFS e-learning programme. This includes specific training on managing severe and very severe ME and is intended to improve professional understanding, clinical care and patient outcomes.
Development of Improved NHS Services
A national template service specification is being developed for mild, moderate and severe ME/CFS.
The work involves ME/CFS specialists, clinicians, NHS England, people with lived experience and charity representatives. Its purpose is to help NHS commissioners and service providers develop services that better meet the needs of their local populations.
ME/CFS Awareness Campaign
The Government is continuing work on a national ME/CFS awareness campaign.
People with lived experience and the wider ME/CFS community are expected to play an important role in both the development and promotion of campaign materials.
The campaign is intended to attract attention to key information about ME/CFS and direct people towards reliable sources of further information and support.
ME/CFS, Long Covid and Post-Infection Conditions
Work is also continuing to improve links between services for ME/CFS, Long Covid and other post-infection conditions.
The developing service specification for mild and moderate ME/CFS is expected to include Long Covid, with the aim of improving care pathways and providing better coordinated support for people living with these related conditions
Children and Young People
Responsibility for providing services for children with post-infection conditions remains with local Integrated Care Boards.
Services are expected to take account of NICE guidance, and the developing national service specification is intended to support improved pathways for both children and adults living with ME/CFS, Long Covid and related conditions
Summary
The Parliamentary responses during July 2026 show continued progress in ME/CFS research, professional education, awareness and service development.
However, significant challenges remain. These include geographical inequalities in access to specialist services, continued reliance on local commissioning decisions and the absence of a nationally commissioned specialist service for people with very severe ME.
While Government investment in biomedical research and professional education is encouraging, people with severe and very severe ME continue to require greater access to appropriate specialist care, expertise and support.