Action for ME has submitted written evidence in response to the Health Modernisation Bill, calling for stronger national accountability, better data, clearer NICE compliance, and greater investment in ME research.
Thanks to our Big Survey participants, we were able to use data from the 2025/26 survey to inform our response.
The Health Modernisation Bill seeks to improve accountability, patient safety and service consistency. For people with ME, current arrangements have failed to deliver these objectives despite existing NICE guidance (NG206).
We are calling for the Bill to be strengthened in four key areas:
1. Research, innovation and post-infectious disease
ME remains significantly under-researched despite its prevalence, severity and economic impact. We are calling for the Bill’s innovation and research duties to support under-researched conditions such as ME, including the translation of biomedical research into diagnostics, treatments, clinical trials and improved models of care.
2. Strengthening NICE compliance for ME
NICE guideline NG206 sets out clear recommendations for ME care, but implementation remains poor and inconsistent. We are calling for stronger requirements to ensure NICE recommendations are implemented within clear timeframes, with annual reporting on compliance.
3. Reducing variation and strengthening accountability for ME services
People with ME continue to face a postcode lottery in access to appropriate care. We are calling for national minimum standards for ME services, including access to specialist teams, children and young people’s pathways, severe and very severe ME provision, and home-based care.
4. Single Patient Record, data and patient voice
We are calling for the Single Patient Record to capture reasonable adjustments and key care needs for people with ME, and for national data systems to better identify, monitor and analyse ME care. We are also calling for accessible patient involvement, recognising that many people with severe or very severe ME cannot take part in standard engagement exercises.
Our response urges the Committee to ensure that ME is properly recognised within the new NHS accountability framework, so that people with ME can access safer, more consistent and evidence-based care wherever they live.
