Exploring the contested diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis

This thesis explores the controversial diagnosis of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME), which is arguably one of the most contested illnesses. What is particularly striking about CFS/ME is how much is unknown or uncertain about it; including its aetiology, its pathology and even its name. The diagnosis of CFS/ME is a fruitful area for sociological study, yet it remains an understudied area within the sociology of diagnosis. I offer an original insight into CFS/ME and diagnosis by incorporating a historical analysis which frames the contemporary exploration of how people diagnosed with CFS/ME experience their diagnostic journey. There are, I argue, distinct continuities between the historical and contemporary interpretations of fatigue dominated illness. This study explores how CFS/ME has been historically framed through archival research of two fatigue dominated illnesses: neurasthenia and the Royal Free Disease. It also investigates the social framing of CFS/ME by drawing on 42 semi-structured, in-depth, interviews with people who have received a clinical CFS/ME diagnosis in the UK. The focus of which was the participants’ clinical interactions and everyday experiences of living with CFS/ME. By combining these two forms of investigation this thesis seeks to provide an exploration of how people interpret and experience illness and diagnoses, both from a historical and contemporary perspective. The analysis highlights certain key themes that arise from the research data. These include: psychologising, responsibility and legitimacy. These themes feed into the contested nature of CFS/ME and represent continuities between the historical antecedents and contemporary experiences of CFS/ME. I consider the epistemic and ethical implications of having a CFS/ME diagnosis withheld. The research also reveals participants’ feelings of loneliness, stigma and invisibility and it is the first study to explicitly focus upon the loneliness and social isolation experienced by people with CFS/ME. I show how loneliness and social isolation can be conceptually distinct yet similarly experienced, through the idea of ‘necessitated loneliness’. This thesis offers a greater understanding of the participants’ own interpretations of their experiences, bodies and identities. This thesis contributes to the existing literature on the sociology of diagnosis by identifying how the diagnosis of CFS/ME is experienced as a label and a process which has significant social consequences, including stigma, (in)validation and partial access to the sick role. I will demonstrate the crucial role of labelling in determining how people experience contemporary CFS/ME, and how the historical framing of fatigue dominated illnesses has affected that experience.