Under the guidance of Dr. Marcia C. Inhorn, Yale University doctoral student Abigail Dumes will examine the controversy that surrounds the diagnosis and treatment of Lyme disease in the United States. In particular, the researcher will investigate why, in a new era of "evidence-based medicine" (i.e., the paradigmatic shift toward the scientific standardization of biomedical practice), there are two emergent standards of care for Lyme disease and how these standards of care may be related to political power and understandings of the natural environment. The research will be conducted over 18 months, primarily in Connecticut, among Lyme disease patients, physicians, and scientists. The researcher will collect qualitative data through a variety of methods, including participant observation, unstructured and semi-structured interviews, elicitation of illness narratives, and the collection of popular, academic, and virtual media related to Lyme disease. These data will allow the researcher to explore: 1) the relationship between evidence-based medicine and the production and practice of biomedical knowledge; 2) attitudes toward the political regulation of Lyme diagnosis and treatment; and 3) changing understandings of the natural environment, as they affect and are affected by understandings of this disease. This research is important because evidence-based medicine increasingly determines how public health decisions are made. Therefore, a study that explores how evidence-based medicine informs knowledge production and practice among Lyme disease patients, physicians, and scientists will have broad comparative implications for studies of other infectious diseases. Findings from this research may also improve health care for patients with Lyme disease and help policymakers develop guidelines.
This dissertation examines the growing controversy that surrounds the diagnosis and treatment of Lyme disease in the United States. While proponents of the "mainstream" standard of care claim that Lyme disease, a tick-borne bacterial infection, is easily diagnosed and treated, proponents of the "Lyme literate" standard of care claim that diagnostic tests are unreliable and that Lyme disease can persist in the form of "chronic Lyme disease," a condition which mainstream proponents do not recognize but which Lyme literate proponents argue should be treated with long-term antibiotics. This research explores why, in an era of "evidence-based medicine," there are two emergent standards of care for Lyme disease and, more critically, how these standards of care are intimately linked to understandings of political power and the natural environment. In doing so, this research will shed light on shifts in competing claims to how the infected and chronically ill body should be medically known, politically regulated, and environmentally protected in the United States. With the support of the National Science Foundation's Dissertation Improvement Grant, I conducted intensive ethnographic fieldwork from February 2010 through July 2011. Fieldwork included interviews with Lyme patients, physicians, and scientists, as well as with health officials and politicians. In total, I conducted 145 formal interviews. I also engaged in participation observation at a range of sites, including: physicians' offices, patient support group meetings, scientific lab meetings, scientific research conferences related to Lyme disease, and local and regional Lyme-related events (such as fundraisers, health fairs, and seminars). To conduct interviews and engage in participant observation, I traveled throughout the northeastern U.S. and across the country. I am currently writing up my dissertation and hope to have it completed by October 2013, by which point I will be able to report my findings in their final form. Beyond its contribution to medical anthropology and science and technology studies (STS), this research has the potential to address tensions that have exacerbated the Lyme disease controversy over the past three decades. As anthropologist Roy Rappaport observes,"an important first step in rectifying disorders in relations between and among discourses is to make all of them intelligible and audible" (1993:301). Through an ethnographic intervention that moves beyond an interest in "who's right" and "who's wrong" and aims only to "make the understandings of others comprehensible," this research will provide the first in-depth, qualitative analysis of how Lyme disease is understood and acted upon by individuals within each of Lyme's "two camps" (301).