Gender, affective injustice & ‘the greatest medical scandal of the 21st century'

Action for ME’s 2025 Big Survey, which was produced as part of a collaboration between Action for ME and the Institute for Medical Humanities, gathered data from over 5000 people living with ME (myalgic encephalomyelitis) and Long Covid. Respondents (85% of whom self-identified as women) painted a bleak picture. When asked to describe their experiences of seeking NHS healthcare for their ME, more than half said they had been disbelieved by an NHS healthcare professional. One in three had been made to feel that their ME was their own fault, and almost two in five had had an encounter with a clinician that was traumatic or traumatising.

Investigative journalist George Monbiot recently described the treatment of people with ME as the ‘greatest medical scandal of the twenty-first century.’ Drawing on preliminary analysis of the Big Survey data, alongside semi-structured interviews conducted during my PhD, I will interrogate this scandal, illuminate its gendered dimensions, and demonstrate how it constitutes a compelling case study of affective injustice in healthcare.

About the speaker

Katharine Cheston has been engaged in voluntary, activist, and academic work on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for well over a decade. Her work explores how medical humanities researchers can work in partnership with organisations in the Voluntary, Community and Social Enterprise sector. In particular, Katharine is working with Action for ME on their Big Survey, which takes place every five years to explore people’s experiences of, and insight into, living with ME in the UK.

The Zoom link will be circulated closer to the event. If you have any access requirements, please get in touch with us at imh.events@durham.ac.uk.

Please note that this event is free to attend.

This event is hosted by the Gender, Affective Injustice and Health research theme of the Institute for Medical Humanities, led by Roslyn Malcolm and Katherine Puddifoot.