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Divided Bodies

Lyme Disease, Contested Illness, and Evidence-Based Medicine

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Critical Global Health: Evidence, Efficacy, Ethnography

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Book

Pages: 360

Published: September 2020

While many doctors claim that Lyme disease—a tick-borne bacterial infection—is easily diagnosed and treated, other doctors and the patients they care for argue that it can persist beyond standard antibiotic treatment in the form of chronic Lyme disease. In Divided Bodies, Abigail A. Dumes offers an ethnographic exploration of the Lyme disease controversy that sheds light on the relationship between contested illness and evidence-based medicine in the United States. Drawing on fieldwork among Lyme patients, doctors, and scientists, Dumes formulates the notion of divided bodies: she argues that contested illnesses are disorders characterized by the division of bodies of thought in which the patient's experience is often in conflict with how it is perceived. Dumes also shows how evidence-based medicine has paradoxically amplified differences in practice and opinion by providing a platform of legitimacy on which interested parties—patients, doctors, scientists, politicians—can make claims to medical truth.

Praise

“This exceptional book takes readers into the heart of an important medical controversy about the very nature of Lyme disease. Sensitively portraying the struggles of Lyme sufferers, as well as the divided opinions of the clinicians who care for them, this book demonstrates how evidence-based medicine may not reflect the social complexities of a deeply contested illness. A must-read for scholars of American health and medicine and for anyone interested in the growing Lyme disease epidemic.” - Marcia C. Inhorn, Professor of Anthropology and International Affairs, Yale University

“Abigail A. Dumes persuasively makes the case that ‘Lyme disease is one of the nation's most controversial medical issues,’ leading readers to care about it and about the people who are deeply invested in both sides of the debate. Divided Bodies is exceptionally well written and informed by incredibly rigorous research.” - Alissa Cordner, author of Toxic Safety: Flame Retardants, Chemical Controversies, and Environmental Health

“The controversy over the existence and meaning of chronic Lyme disease is one of the most fascinating stories in contemporary medicine. In Divided Bodies, Abigail A. Dumes explores with penetration and subtlety this epistemic border on which patients and physicians wage an intense battle to impose their truth.” - Didier Fassin, Professor at the Institute for Advanced Study and Chair of Public Health at the Collège de France

"This book is valuable for its illustration of how some medical paradigms become mainstream, while others disappear. Chronic Lyme, whatever it is, holds up a mirror to evidence-based medicine. Dumes's ethnographic approach provides voluminous details, new insights, and a refreshing alternative to much of the existing literature on the Lyme controversy. Highly recommended. All readers." - M. Gochfeld, Choice

Divided Bodies will be of interest to medical anthropologists and sociologists, and health professionals curious about how illnesses come to be contested.... It is an impressive example of how ethnography can shed light on the relationship between illness, disease and evidence-based medicine.”
  - Caragh Brosnan, Sociology of Health & Illness

Divided Bodies is a thorough, anthropo­logical study of the controversies present in Lyme disease and inherent in EBM.... Interest­ed physicians are encouraged to check it out.” - William Murdoch, Family Medicine

“Being the first of its kind, Abigail A. Dumes’ ethnographic study of Lyme disease in the United States introduces its readers to a world largely unknown.... Thanks to her continuous, careful attention, readers get a thorough idea of what is at stake.” - Josephine Rudbech, Ethnos

"I come away from this book with a clearer understanding of how evidence-based medicine makes multiple kinds of truth claims accessible, and how the idea of evidence becomes an agent in all approaches to chronic Lyme/post-treatment Lyme disease syndrome. This degree of balance, reflected down to Dumes’s word choice, is masterful. . . . Pre-COVID, most abled people’s lives were cordoned off from those who suffer chronically. Dumes’s text offers insight into what it might mean to distinguish, in our research and writing practices as much as in the subjects of our research, what we mean by evidence, what we mean by knowledge, and how we hold multiple competing worldviews in the same frame, as we pay attention to the suffering of others." - Charis Boke, Medical Anthropology Quarterly

“Throughout [Divided Bodies], Dumes achieves a balancing act as an ethnographer of an onto-epistemological debate, wherein questions about what Lyme is frequently crowd out the social-scientific questions of what Lyme means and how it is actedupon.” - Emma Broder, H-Sci-Med-Tech, H-Net Reviews

Divided Bodies is an excellent example of the scholarship possible for those who take seriously the prospect of contested truths in contemporary medicine. It is well worth a read for those interested in the hegemony of evidence-based medicine and the persistence of the medically unexplained, as well as others invested in the specificities of Lyme disease as it is experienced and treated.” - Paula Martin, Culture, Medicine, and Psychiatry

"Abigail Dumes effectively presents a transdisciplinary approach for articulating the rhizomatic representations of illness that yields the phenomenon of Lyme Disease. It was a joy to read." - Frans Jackop Lourens Robberts, Sociology of Health & Illness

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Author/Editor Bios

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Abigail A. Dumes is Assistant Professor of Women's and Gender Studies at the University of Michigan.

Table Of Contents

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Acknowledgments  ix
Introduction: Lyme Disease Outside In  1
1. Mapping the Lyme Disease Controversy  27
2. Preventing Lyme  65
3. Living Lyme  99
4. Diagnosing and Treating Lyme  158
5. Lyme Disease, Evidence-Based Medicine, and the Biopolitics of Truthmaking  187
Conclusion: Through Lyme's Looking Glass  222
Notes  235
Glossary  271
References  273
Index  327

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Awards

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A 2021 CHOICE Magazine Outstanding Academic Title