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Action for ME launches the 2025 Big Survey

  • Area of Work: The ALLIANCE
  • Type: News Item
  • Published: 10th November 2025
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Action for ME has opened its 2025 Big Survey, inviting people across the UK to share their experiences of living with CFS and ME.

Action for ME has opened its 2025 Big Survey, inviting people across the UK to share their experiences of living with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). The survey is open to anyone living with ME, whether or not they have a formal diagnosis, and to people with long Covid who experience ME symptoms.

There are two versions of the survey: one for adults aged 18 and over, and another for people aged 17 and under. Run every five years, the Big Survey helps to build a comprehensive picture of life with ME across the UK. The last survey received more than 4,000 responses, providing valuable insight to support research and policy work.

This year’s Big Survey is a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities at Durham University’s Institute for Medical Humanities. Postdoctoral researcher Dr Katherine Cheston is working with the team to support survey development, data collection and analysis. Responses will be anonymised and shared with research collaborators, including Dr Audrey Ryback at the University of Edinburgh, who will study the age of onset, triggers and heritability of ME.

The survey is open until 27 January 2026. You can access both surveys and find out more about the project here.

Working with the community

Action for ME is also exploring funding for a pilot project to work with people with ME in Scotland. The project aims to identify communication tools and resources that can support people exploring or receiving an ME diagnosis. The organisation is keen to hear from those with lived experience to ensure the work reflects the realities of living with ME.

To share your thoughts or find out more, contact the team at scotland@actionforME.org.uk

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