Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the safety of NHS care for patients with (a) severe and (b) very severe ME.

The 2021 National Institute for Health and Care Excellence’s (NICE) guidelines on the diagnosis and management of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), provides recommendations on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach with access to a range of health and social care professionals based on needs.

The NICE’s guidelines are not mandatory, but the Government does expect healthcare commissioners to take the guidelines fully into account in designing services to meet the needs of their local population, and to work towards their implementation over time.

No specific assessment has been made of the adequacy of the safety of National Health Service care for patients with severe and very severe ME/CFS, but there are steps that the Government is taking to improve care for patients with ME/CFS, including those with severe and very severe ME/CFS.

The Department has funded the £3.2 million DecodeME study with the Medical Research Council to understand the causes and consequences of, and find treatments for, ME/CFS. This study aims to understand if there is a genetic component to the condition and, in doing so, increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.

The public consultation on the interim delivery plan for ME/CFS was run in 2023. It has been a priority since July 2024 to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising a report summarising the responses, for publication. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those with severe and very severe ME/CFS.