Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether he has issued guidance to integrated care systems (ICS) on commissioning specialist care and treatment services for myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS); and whether he has made an assessment of the potential merits of requiring ICSs to commission minimum levels of those services.

The Government has made a commitment to publish a final delivery plan for ME/CFS. 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.

In 2021, the National Institute for Health and Care Excellence (NICE) published guidance on the management and diagnosis of ME/CFS. The NICE’s guideline 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. Although NICE guidance is not mandatory, 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.

My Rt Hon. Friend, the Secretary of State for Health and Social Care has not yet had any meetings with National Health Service clinical teams specialising in myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), ME/CFS researchers, patients, or patient group representatives.