Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether her Department (a) has and (b) plans to provide funding for new treatments for ME or chronic fatigue syndrome.

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. As part of this, the NIHR and 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 guidance on ME/CFS diagnosis and management, published in October 2021. In addition, 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.