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 the provision of care for people with ME.

No assessment has been made on the adequacy of the implementation of National Institute for Health and Care Excellence (NICE) guidance NG206 on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). NICE 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.

There are steps that the Government is taking to improve care for patients with ME/CFS. It is a priority for the Department to publish the final ME/CFS delivery plan. We cannot comment on the exact content of the final delivery plan at this time, but it will be shaped by the consultation responses, along with continued close engagement with stakeholders, with three broad themes of attitudes and education, research, and living with ME/CFS. We aim to publish it at the end of March 2025.

The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes.

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund 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. Further details of the study are available at the following link:

www.decodeme.org.uk