Chronic fatigue syndrome / myalgic encephalopathy: a knowledge-based approach to an indeterminate illness

Abstract

In this thesis I argue for a knowledge-­‐based approach to CFS/ME, one that considers multiple types of knowledge (embodied, scientific, clinical, interpersonal) and asks what these can tell us about the lived experience of this condition. CFS/ME is a contested illness, meaning that science and medicine, the stewards of authoritative knowledge of illness, have yet to resolve it; its causes, course, and cure are presently uncertain. Drawing upon interviews and immune biomarker information from fifteen New Zealand sufferers I show how this condition plays out across multiple sites: the body, the mind, in daily life, and in people’s social worlds. In each of these domains new forms of knowledge are made and mobilised. Though they highlight different aspects of the illness, these different forms of knowledge consistently point to the variability that pervades individuals’ experiences of CFS/ME. I argue that this variability, which is often described as an obstacle to understanding CFS/ME, could instead be considered a substantive and significant part of this condition – one that engenders flexible coping practices and repositions sufferers as key knowledge producers. Living with CFS/ME reconfigures relationships between individuals, their bodies, their families and friends. Explanations are developed piecemeal, as my participants pull together bits of information they have learnt, lived, and been told. Normative ways of coping are challenged, and sometimes fail; alternatives are sought. Considering the types of knowledge that emerge in such instances not only elucidates the experiences of CFS/ME sufferers, but also elicits questions of credibility and expertise. These speak back to work on delegitimisation and stigma, highlighting the role of destabilised medico-­‐scientific authorities in producing social uncertainty. The knowledge-­‐based approach advanced here thus invites new ways of seeing CFS/ME alongside the existing medical perspectives that cannot fully account for it. Keywords: Chronic Fatigue Syndrome; Myalgic Encephalopathy; contested illness; knowledge; embodiment; explanatory models; care; local worlds; New Zealand.