Divided Bodies: Lyme Disease, Contested Illness, and Evidence-Based Medicine

For most of its history, medicine was more art than science. Physicians disagreed on pretty much everything: how the body worked, the nature of disease, and how to treat patients. The twentieth century’s marriage of medicine and science was supposed to change all this. Physicians were to be a kind of bedside scientist—an expert whose decisions would no longer be guided by belief or tradition, but by the strength of the evidence. Evidence-based medicine, as this approach came to be called, promised to adjudicate conflict and diminish disagreement. Medicine would speak with one voice and in return, the public would imbue those words with authority. Why then, decades after evidence-based medicine become standard practice, do we still have contested illnesses? Cases in which disagreement not only seems not to have diminished, but to have been amplified? Divided Bodies: Lyme Disease, Contested Illness, and Evidence-Based Medicine, Abigail Dumes’s ethnographic investigation of Lyme disease, attempts to answer this question. While acute Lyme infection is a uniformly accepted disease, chronic Lyme disease’s existence, let alone its prognosis and treatment, remains a site of intense debate. The conflict lies not just between patients and physicians, but between the experts. Mainstream physicians disagree with ‘‘Lymeliterate’’ physicians, while researchers continue to publish evidence that support different understandings of the disease. Divided Bodies wades into these turbulent waters, not to adjudicate the conflict or even, largely, to make sense of it. Instead, Dumes attempts to account for it by mapping the nodes of what she calls the ‘‘fractured reality’’ of Lyme itself. For Dumes, these disparate nodes are not synonymous with ‘‘camps,’’ but represent how each perspective comes to differently know the thing called Lyme disease—because, as the text makes clear, there is very little consensus about Lyme. There are debates about its origin story, epidemiology, etiology, what counts as appropriate diagnostic testing; and even different conceptions of what it is one is treating. These are not just differences of opinion, but divided bodies of epistemology. In interrogating these disparate ways of knowing, Dumes demonstrates how all sides of the debate use the common tools of evidence-based medicine to construct a legitimate platform for knowing contradictory things about the same disease. Dumes reconstructs these divided realities from observing and interviewing patients, scientists, and both mainstream and Lymeliterate physicians. She also completed informal interviews and observations at research laboratories, public health meetings, fundraising events, patient support group meetings, and scientific conferences. And finally, she traced the discourse around Lyme as it traveled through blogs, newspapers, scientific articles, and listservs. From this empirical foundation, Dumes maps how people from different epistemic locations ‘‘do,’’ ‘‘live,’’ and ‘‘know’’ Lyme disease. This mapping led Dumes to one of her primary insights: evidence-based medicine cannot resolve such disputes, because it has, in effect, produced them. Dumes observes that evidence-based medicine has crafted Lyme’s visibility through codifying it as ‘‘medically unexplainable.’’ Medicalization, a central theory in medical sociology, describes the process through which illnesses come to be, in a sense, ‘‘owned’’ by medicine. Dumes makes the case that contested illnesses are examples where medicine is actively engaged in disowning an illness. Unaccounted for by the evidence, contested illnesses become newly visible as a residual but formalized category of ‘‘medically unexplainable illness.’’ For these illnesses, mainstream science is searching neither for a cause nor a cure because the provenance of patient suffering is not ‘‘unknown’’ but is finitely categorized as ‘‘unexplainable.’’ Evidence-based medicine Reviews 39