Summary
- On 12th February 2025, Baroness Scott of Needham Market asked the government about plans to achieve 100% compliance with the 2021 NICE guideline on ME/CFS by 2028, as part of the ME/CFS delivery plan.
- Baroness Merron responded that the ME/CFS delivery plan is still being developed, with consultation responses and stakeholder engagement informing the final plan, expected to be published by the end of March. The plan will focus on research, improving attitudes, education, and the lives of people with ME/CFS.
- Dr Charles Shepherd comments, emphasising the need for clear instruction from the DHSC to NHS England to ensure all local Integrated Care Boards provide ME/CFS referral services, and for those referral services to be given the staffing and facilities needed to diagnose and manage ME/CFS in line with the NICE Guideline.
On the 12th February, 2025, Baroness Scott of Needham Market (member of the House of Lords) asked the government the following question about compliance with the 2021 NICE guideline, which was answered on the 27th February, 2025, by Baroness Merron (member of the House of Lords).
Question:
To ask His Majesty's Government what plans they have, if any, to introduce a goal of 100 percent compliance by 2028 with the 2021 NICE guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as part of their delivery plan for ME/CFS.
Answer:
The content of the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan has not yet been finalised. The responses to the 2023 interim delivery plan consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish by the end of March. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
To support this, we have reconvened the ME/CFS Task and Finish Group, including senior Department and cross-Government officials, ME/CFS specialists, and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved administrations, and ME/CFS charities and organisations, in the development of the final delivery plan for ME/CFS.
MEA Comment
What we need to see in the DHSC Delivery Plan is a clear instruction from the DHSC (who is responsible for overall health service policy and strategy) to NHS England (who is responsible for implementation of NHS policy) that they need to ensure that all the integrated care boards (who plan and deliver services at a local level) are providing an ME/CFS referral service
And where a referral service currently exists they have the staffing and facilities to diagnose and manage ME/CFS that is consistent with all the very clear recommendations in the new NICE guideline on ME/CFS
At present, there is no indication that this very important and necessary instruction is going to be made, or that any extra funding to make sure these ME/CFS referral services are NICE guideline compliant will be made available
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
