Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment they are taking to help support people living with ME/CFS and Ehlers-Danlos Syndrome simultaneously.

The Department recognises the significant challenges faced by individuals living with multiple complex conditions such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and Ehlers-Danlos syndrome (EDS). Our approach focuses on improving care coordination and access to appropriate services.

For ME/CFS, we have published a cross-Government final delivery plan, which sets out actions to boost research, improve professional education, and enhance support for daily living, including community-based services and better benefit assessments. While the plan is specific to ME/CFS, it acknowledges overlaps with other long-term conditions such as EDS and commits to exploring synergies during implementation.

Additionally, the 10-Year Health Plan aims to transform services and outcomes for people living with complex conditions such as EDS and ME/CFS by prioritising integrated, personalised care. The plan focuses on earlier diagnosis and promotes multidisciplinary teams and community-based services to deliver coordinated support closer to home, reducing reliance on hospital care. Digital innovations, including remote monitoring and personalised care planning, will help manage long-term conditions more effectively.

Guidance published by the National Institute for Care Excellence on the diagnosis and management of ME/CFS, reference code NG206, does not recommend routine testing for conditions such as EDS as part of the diagnostic process for ME/CFS. The guideline makes clear that there is no single test for ME/CFS and diagnosis should be based on the clinical assessment of symptoms persisting for at least three months. It advises clinicians to carry out investigations only to rule out other possible causes of symptoms or to identify comorbidities that require separate management. Testing for other conditions, like EDS, should be considered if clinical features suggest their presence, rather than as a standard part of ME/CFS assessment.