Dr Katharine Cheston, from our Institute for Medical Humanities and Department of Sociology, is working with the charity Action for ME to better understand what it is like to live with ME and long Covid.
Myalgic Encephalomyelitis (ME) – sometimes referred to as ‘chronic fatigue syndrome’ – is a debilitating condition that causes crushing exhaustion, sleep problems, difficulties with thinking and memory (‘brain fog’), and pain.
Every five years, Action for ME undertake a Big Survey to explore the impact of ME on people’s lives, including employment, social interaction, and access to healthcare.
The 2025 Big Survey is being run in collaboration with our Institute for Medical Humanities.
The 2025 Big Survey is informed by Dr Cheston’s doctoral research on medically unexplained symptoms.
She found that women living with complex, poorly understood illnesses like ME experience high levels of stigma and shame.
Many report feeling that when it exists in the absence of a biomedical explanation, they are judged or blamed by others for their ill health.
Dr Cheston, who has personal experience of ME, will also use medical humanities approaches and methods in the analysis of the survey responses, to illuminate the complex burden faced by people living with ME in the UK.
It is estimated that ME and ME-like symptoms affect approximately 1.35 million people in the UK, including half of people who are living with long Covid.
Many people living with the condition experience severe symptoms, face delays in diagnosis, become socially isolated, are unable to work, and lack adequate support.
Action for ME is the only charity in the UK that provides support, including healthcare, to people of all ages affected by ME.
The findings from the 2025 Big Survey will inform all aspects of the charity’s work, including its fundraising campaigns, advocacy, policy recommendations, and provision of healthcare services.
Dr Cheston’s involvement in the project demonstrates an increasing recognition of the value of medical humanities approaches in improving understandings of health and illness to transform health policy and practice.
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