We first ran this survey in 2022; we are updating our evidence in light of the government’s proposed welfare reforms and the Pathways to Work Green Paper. Ministers have said they aim to increase the number of disabled people in work and to change assessment and support processes; to represent our community accurately, we need to understand what is really happening for people with ME/CFS or Long Covid.
Please tell us about your situation: whether you are able to work or volunteer; whether you tried to work but could not maintain employment; what helped you to stay in work; what made it harder; and what changes or support would make a difference now. If you are unable to work or volunteer at all because of your health, your input is essential; we want to ensure the whole community is accurately reflected. The Green Paper is heavily focused on getting people back to work; for many disabled people this is not possible, and your experience matters.
Your responses will shape the ME Association’s policy work and guidance; they will inform our engagement with MPs and officials; and they will form part of our written submission to the House of Commons Work and Pensions Select Committee on disability and employment. Thank you for taking part.
UPDATE: Thank you for your interest, this survey is now closed.
Ella Smith
Welfare Rights Consultant,
The ME Association
More Information
- ME Association: Disabled people call for an independent PIP review; add your name | September 8, 2025
- ME Association: Welfare reform round-up: new independent disability panel, applications opening soon | August 22, 2025
- The ME Association’s Position Statement on the Proposed Welfare Reforms | July 4, 2025
- ME Association: Welfare Reform: The Universal Credit Bill – Why It Matters to People with ME/CFS and Long Covid | July 4, 2025