Image Credit: Yvette Cooper © House of Commons/Roger Harris, cropped & shared under an Attribution 3.0 Unported (CC BY 3.0) licence.
We now have a new health secretary who has written about her personal experience of ME/CFS – which she developed when she was just 24 and working as a researcher for John Smith, the then Labour Party leader.
Yvette Cooper was also a member of the All Party Parliamentary Group on ME but has not made any recent parliamentary contributions on ME/CFS.
We will therefore be drawing her attention to a number of key issues from the DHSC Delivery Plan on ME/CFS which require ministerial action. In particular:
- The continued and unacceptable delay in setting up some form of national specialist referral service for people with very severe ME/CFS who require hospital admission. It now appears that no meaningful action will now take place until April 2027 when NHS England is abolished and merged into the DHSC.
- The continued failure of health commissioners and Integrated care boards (ICBs) to commission new specialist referral services where none currently exist and to make sure that existing referral services are compliant with all the recommendations in the NICE guideline on ME/CFS in relation to diagnosis, management and prescribing. At present, no new ME/CFS referral services are being created, some are closing (the most recent being the ME/CFS service at the George Eliot Hospital in Nuneaton) and many are taking on Long Covid patients despite already having long ME/CFS waiting lists.
- The continued failure of organisations responsible for medical education and training to ensure that students and all qualified health professionals and social care staff receive appropriate education and training on ME/CFS. Some progress is being made at the Medical Schools Council and the Royal College of Physicians and the development of NHS e-learning modules. However, the number of health professionals using these learning modules is disappointingly low.
- The continuing failure to address the serious disparity in government research funding for ME/CFS when compared to other serious long term medical conditions.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Further information
- GOV UK: Ministerial Appointments: July 2026
- The ME Association: MP Julian Smith asks parliamentary questions regarding the lack healthcare provision for people with very severe ME | July 17, 2026
- BBC News: Charity concerns over changes to ME services | July 14, 2026
- The ME Association opposes the Closure of ME/CFS and Long Covid Services in Coventry and Warwickshire | July 7, 2026
- The ME Association: Government announces £4.75 million funding for Sequence ME research project | May 12, 2026
- Edinburgh University: Sequence ME & Action for ME website covering FAQ