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

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

Author: Abigail A. Dumes

Publication Information: Durham, NC, Duke University Press, 2020, 338 pp., $27.95, paperback

Divided Bodies, by Abigail Dumes, PhD, is an intriguing exploration of the controversies surrounding Lyme disease, the effects of evidence-based medicine (EBM) on our modern diagnostic approach, and the impact the advent of EBM has had on medically unexplainable illness. Dr Dumes is an anthropologist by training, and her book is based on her PhD thesis work at Yale. Her approach to this topic is decidedly anthropological, which can be interesting and frustrating at the same time; she simply seeks to report on and catalogue the subject matter at hand without assigning degrees of value or truth to any aspects of it. Physician readers, often accustomed to arriving at the “right” answer, might feel stymied by this approach. That’s one of the points Dr Dumes is trying to make.

At the outset of the book, Dr Dumes makes a distinction between “mainstream” and “Lyme-literate” physicians. The author states in the footnotes (p. 235), while acknowledging the potentially controversial nature of these terms, that she chose them based on observing physicians in the two groups self-identifying with those labels. This is perhaps the starkest example of the challenge of Dr Dumes’ anthropological style; although she resists assigning value, the mainstream physician reader cannot help but be struck by the positive connotation afforded the “Lyme-literate” physicians.

The early parts of the book also set the stage for an interesting discussion of the unintended consequences that Dr Dumes perceives the advent of EBM to have had on the health care system. The author contends that EBM has changed the epistemology of medicine, such that signs (ie, objective findings) have all but displaced symptoms (subjective findings), in our diagnostic processes. This is supported by a previous text, entitled The Gold Standard.1 Family physicians reading this will likely be sympathetic, as we endeavor to impart to our learners to remember the whole person, the whole disease experience. Relatedly, there have been recent attempts to reintroduce symptomatology into EBM.2 Dr Dumes also draws a potentially controversial equivalence between the randomized, controlled trial (long seen as the gold standard of EBM) and other, softer forms of evidence such as patient experiences and case reports. This “truth in all” approach runs counter to much of what academic family physicians teach in our daily practices; readers may find it useful to refer to a previous text exploring the differences often inherent in medical practice and opinion.3

Chapter four, “Diagnosing and Treating Lyme,” will likely be the most interesting section of the book for practicing physicians. In it, Dr Dumes describes her experiences interviewing and shadowing four physicians, two on either side of the divide, who primarily specialize in Lyme disease. Two central themes emerge from the physician interviews. First, that all involved are making an earnest attempt to apply the literature and science—as they interpret it—to provide maximal benefit to their patients. Second, and perhaps most compelling, is that the treatments and approaches between the different physician groups aren’t as different as one might expect; readers could interpret this as evidence of one of Dr Dumes’ arguments about EBM, that both sides are able to point to various levels of evidence within the hierarchy as proof of their approach.

The rest of the book, although richly detailed, is also quite a dense read. It will take a motivated reader to traverse the first half of the text, which is often thesis-like in its structure and pace. I can’t help but wonder at the intended audience for this book, and whether it includes practicing physicians. The more academically minded will surely enjoy it, but many physician readers may find themselves lost in the social science weeds. That said, there can be no doubting Dr Dumes’ skill as a writer, as shown in this evocative opening to a patient narrative (p. 101): “Entering Madison’s home in Connecticut was like arriving at a party soon after it was over.” The author also provides very useful summaries at the end of each chapter, or each section, in the longer chapters.

Divided Bodies is a thorough, anthropological study of the controversies present in Lyme disease and inherent in EBM. A scholarly work that demands a motivated reader, the text eventually rewards with physician experiences and a balanced argument. Interested physicians are encouraged to check it out; those looking for a light summer read should look elsewhere.