Doctoral Dissertation Research: An Ethnographic Study of Patient-Activism and an Emerging Illness

New York University, New York NY

Investigators

Abstract

This award supports a doctoral dissertation research project to conduct a sociological study of people with chronic fatigue syndrome. The researcher will attempt to understand how people with this syndrome seek legitimation of their bodily experience, and in the process attempt to put into practice the syndrome as a disease in and beyond biomedicine. The project will build on three years of preliminary research, and it will be the first study to examine the syndrome using participant-observation as its primary research strategy. The researcher will inquire into the forms of sociality that are possible in the face of exhausted bodies, the distribution of biomedical knowledge, and the stratified nature of contemporary US healthcare. She will also explore networks of knowledge exchange among patients, doctors, researchers, and institutions that form around the diagnostic term and shape its medicalization. Results of this research are to be presented at conferences and published in academic journals. The researcher will also disseminate findings to the patient community, deliver a policy paper to policymakers, and continue to work with the patient community to develop further policy solutions. This ethnographic research project on chronic fatigue syndrome promises to make substantial contributions to Science and Technology Studies, Anthropology, and related disciplines. The researcher will systematically record in real-time the process by which symptoms are transformed into disease. The results of the study will serve to advance theories of the role of symptoms in sustaining biosociality by presenting a case study in which patient socialities emerge without known biomarkers in common. It promises to meaningfully advance understandings of the role of patient activism in the formation of novel diagnoses and new diseases within the taxonomies of Western biomedicine, and of the reasons that patient movements either succeed or fail. It will also contribute to ongoing reconsideration of the body in disability studies by theorizing impairment as a resource for collective action. Finally, it may enhance phenomenological approaches to anthropology in ways that may generate new theories of disease formation. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.