We are trying to better understand the experience of people with severe and very severe ME/CFS who have gone through the NHS Continuing Healthcare (CHC) assessment process.
CHC funding is awarded based on a “primary health need”. However, we are increasingly hearing that people with significant, complex and highly disabling ME/CFS are not qualifying.
Research has shown significant regional variation in CHC eligibility (Nuffield Trust, 2025). As assessments depend on clinical judgement and interpretation of the National Framework, individual decision-making can influence outcomes. In conditions such as ME/CFS, where professional understanding remains inconsistent, this may result in complex needs being under-recognised.
We are therefore asking:
🔹 Have you (or someone you care for) gone through the CHC assessment process?
🔹 Were you awarded CHC funding?
🔹 If not, what reasons were given?
🔹 Did the assessment adequately reflect deterioration, unpredictability and complexity?
🔹 Did you feel PEM was properly understood and documented?
We are gathering information to:
If you are willing to share your experience, please comment below or message us privately at health@meassociation.org.uk
More about CHC funding can be found here: https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/
Thank you so much for your time.