Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps her Department is taking to help improve specialist services for patients diagnosed with myalgic encephalomyelitis.

Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (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 and CFS diagnosis and management, published in October 2021.

In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey. This report provides insight into the services being delivered for adults, children, and young people with ME and CFS. The Department published My full reality: an interim delivery plan for ME/CFS in August 2023, which sets out a number of actions to improve the experiences and outcomes for people living with the condition, including better education of professionals and improvements to service provision.

Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the interim plan meets the needs of the ME and CFS community, and to understand if there are any gaps where further action may be necessary. The Department is currently analysing over 3,000 responses to the consultation, and will publish a summary of the consultation responses in due course. Those consultation responses, along with continued close engagement with key stakeholders, will drive the development of the final cross-Government ME/CFS Delivery Plan, which will be published later this year.