Last week, MP Julian Smith (Conservative, Skipton and Ripon) tabled three parliamentary questions highlighting the healthcare needs of people with very severe ME. The questions were answered on 16th July by MP Sharon Hodgson (The Parliamentary Under-Secretary for Health and Social Care) and all received the same response (see below)
Questions
- To ask the Secretary of State for Health and Social Care, what recent steps his Department has taken to support those with very severe ME | July 8, 2026
- To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of creating a specialist NHS service to support those with very severe ME | July 8, 2026
- To ask the Secretary of State for Health and Social Care, what steps he is taking to develop specialist expertise in hospitals for treating very severe ME, further to the Prevention of Future Deaths Report published on 8 October 2024 | July 8, 2026
Answer
MP Sharon Hodgson, The Parliamentary Under-Secretary for Health and Social Care replied:
The Department, together with NHS England, has developed an e-learning programme to help support healthcare professionals in the treatment and care of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The programme consists of four modules, three of which have universal access, while the fourth is targeted at healthcare professionals. This programme includes two modules on ‘Managing Severe ME/CFS’, which also covers very severe ME/CFS, and the second version of this module for healthcare professionals addresses clinical approaches to severe and very severe ME/CFS. The e-learning is available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288(opens in a new tab)
This e-learning, while not mandatory, is expected to support healthcare professionals, including in hospitals, deliver the right care for patients with severe and very severe ME/CFS. Additionally, the National Institute for Health and Care Excellence has produced evidence-based guidelines for the diagnosis and treatment of ME/CFS, including in hospitals, which are expected to be taken fully into account.
Additionally, ME/CFS: the final delivery plan, published in July 2025, included an action to consider whether a specialised service should be commissioned by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS.
MEA Comment
Severe and very severe ME/CFS: Action points in the DHSC Delivery Plan regarding the management of severe and very severe ME/CFS.
I am part of a Forward ME sub group on NHS services that is working with the DHSC and NHS England on the action point re developing a template service specification for people with mild and moderate ME/CFS. We have been successful in persuading them to include those with severe ME/CFS in this template. The work on this is now quite advanced.
As noted in this ministerial reply, there is also a ministerial action point in the DHSC Delivery Plan to explore the need for some form of national specialist referral service for people with very severe ME/CFS.
Unfortunately, we have been unable to obtain any meaningful information regarding what is happening at the DHSC to the development of some form of national referral service for people with very severe ME/CFS and who is involved. In view of other recent ministerial announcements relating to a delay in this work till April 2027 it appears that very little progress has been made.
Following communication with the DHSC DP team we have submitted information on very severe ME/CFS that I have been drafting and co-ordinating. This includes information on the numbers that may be involved along with the definition and medical assessment of people with very severe ME/CFS, especially in relation to nutritional assessment and hospital admissions.
Two other groups are working on separate inputs regarding the hospital management of those with very severe ME/CFS and the provision of information and advocacy for people who are having urgent problems relating to hospital admissions.
So, there is important work in progress away from the DHSC Delivery Plan relating to the care and management of people with very severe ME/CFS who may require hospital admission, or are currently in hospital.
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
