Multi-layered medical uncertainty: The interaction between medical research, the clinic and patient experience in the context of highly uncertain conditions

How can we understand the different forms of medical uncertainty, their interplay, the debates that surround them and the linkages with socio-economic vulnerability? Using qualitative in-depth interviews with patients, clinicians and researchers, documentary analyses and hashtag ethnography, this project will explore four conditions characterised by multi-layered medical uncertainty (i.e. simultaneous uncertainty about aetiology and diagnosis alongside the scarcity of specific treatments) both in their historical developments and in everyday experiences. The four conditions that will be explored are fibromyalgia, ME/CFS, Long Covid and chemobrain. The project will explore how patients contend with the illness experience, the often difficult processes of obtaining a diagnosis and having it recognised by other medical professionals and society at large, and the scarcity of specific treatments. The project will further analyse how clinicians and researchers manage the everyday uncertainty in their work, and the debates, negotiations and conflict between them and the patients surrounding the definitions of these conditions. The result will be an understanding of medical uncertainty that is multi-dimensional, dynamic and social. Finally, this project will include a public engagement component that aims to increase awareness of these conditions and of their under-diagnosis and under-recognition, particularly among primary care professionals.