When MP Dr Rupa Huq tabled her Written Question to “To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve support for people with myalgic encephalomyelitis” a potentially revealing reponse was received.
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021.
The Department funds research into ME/CFS through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. A decision on the next steps for ME/CFS at the national level will be taken in the coming weeks.
Andrew Gwynne MP Parliamentary Under-Secretary (Department of Health and Social Care).
Does ‘A decision on the next steps for ME/CFS at the national level will be taken in the coming weeks.’ mean that the delayed Delivery Plan is going to be published? Last that was heard was via a Parliamentary Question prior to the July 4th election when the then Minister of State (Department of Health and Social Care) commented that “The consultation responses, along with continued close engagement with stakeholders, will inform the development of the final delivery plan, which we aim to publish later this year.”
It is known that the consultation on the draft Delivery Plan ended in October 2023 and that pre-election “the extremely high level of qualitative data and feedback received … took a long time to process…. the final plan will be forthcoming and the aim is to publish it in the Autumn.”