Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve (a) diagnosis, (b) treatment and (c) awareness of Myalgic Encephalomyelitis (ME) in the NHS.

The Department, through the National Institute for Health and Care Research (NIHR), provides funding for research projects which aim to understand the underlying causes of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and find new treatments for the condition. For example, the NIHR, together with the Medical Research Council, have funded 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. By helping us to understand ME/CFS better, this research has the potential to lead to new treatments for the condition.

Integrated care boards (ICBs) are responsible for commissioning specialist 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.

It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services to meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

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/CFS.

The Department has been working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, to support staff to be able to provide better care and improve patient outcomes. This has involved feedback and input from patients. The Medical Schools Council will promote the NHS England e-learning package on ME/CFS to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS. A decision on next steps on ME/CFS at the national level will be taken in the coming weeks.