We have received an incredible 5113 responses! Thank you for taking the time and energy to support this vital research.
Through 2026, postdoctoral researcher, Dr Katherine Cheston, will be analysing all the data, with input from the Patient and Public Involvement Group that have been working on this project. We hope to be able to share some of our findings with you in the summer.
Every 5 years, we develop our Big Survey. It enables us to gather large amounts of data which can then be analysed and used to support our wider work and illustrate the impact of ME.
Our last Big Survey was completed by over 4,000 children, young people, and adults, in 2019.
The 2025 Big Survey is a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities (IMH), Durham University. Postdoctoral researcher, Dr Katherine Cheston, is working with us to help support the survey's development, data collection, and subsequent analysis.
You can find out more information about the Discovery Research Platform for Medical Humanities at the IMH, and Dr Cheston's involvement further down on this page.
The Big Survey was open to people living in the UK with ME, whether or not they have a diagnosis.
It was also open to people living in the UK with long Covid and who experienced ME symptoms, even if they didn't have a diagnosis.
The views and experiences of people affected by ME crucial to our work and are regularly used to support our awareness raising and influencing policy, service development, and research.
However, it is also essential that we keep this data up-to-date to account any recent research developments, changes in service provision, and policy changes, and how they impact the lives of people with by ME.
Responses will be anonymised to be used by Action for ME, and our research collaborators, in their work. They will also be shared with Dr Audrey Ryback, University of Edinburgh, who will use the data to study the age of ME onset, triggers, and heritability.
Dr Katharine Cheston is Mildred Blaxter postdoctoral fellow in the Department of Sociology and the Institute for Medical Humanities at Durham University. Since March 2025, she has worked with Action for ME to redesign their ‘Big Survey' as part of a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities, which is based at Durham University and funded by Wellcome.
Supported by Wellcome, the Discovery Research Platform for Medical Humanities at Durham University empowers humanities and social science researchers, people with lived experience, and health, creative and voluntary sector professionals to co-develop new and experimental approaches to tackling health challenges, including mental health and health inequalities.
The Institute for Medical Humanities at Durham University conducts research into ‘hidden experience’ and investigates experiences of health and illness which are marginalised, difficult, unspeakable, unacknowledged, or invisible. It aims to transform knowledge within and beyond the critical medical humanities, improve health policy and practice, and benefit the lives of communities and individuals.
