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The Construction of Illness Categories in Medicine and Public Policy: AIDS, Chronic Fatigue Syndrome, and the Problem of Reification

Roberts, Alexander Nelson
http://rave.ohiolink.edu/etdc/view?acc_num=osu1511872977343143

Abstract Details

2017, Doctor of Philosophy, Ohio State University, Public Policy and Management.
Medical diagnoses constitute the basic problem definitions around which many health-related policies are built. Among other things, they inform disease prevention efforts, help direct funding of biomedical research, and can determine who is and is not eligible for disability benefits. In recent years, a number of medical scientists have cast a critical light on “fibromyalgia,” “chronic fatigue syndrome,” and certain other diagnoses, arguing that they medicalize what are really psychosocial problems and have led to counterproductive policy interventions. Unfortunately, our capacity to evaluate this argument is limited. Policymakers tend to defer to medical scientists in interpreting illness. However, because medical scientists generally operate in the biomedical paradigm, they do not necessarily have the resources needed to fully evaluate or act on the critics’ arguments. In the first part of this dissertation, I argue that we can approach this problem from a different angle. Instead of asking what kind of problem “fibromyalgia” itself really is, we can ask whether our adoption of that problem definition was appropriate in the first place. As I demonstrate, there are standards endogenous to medico-political discourse that are supposed to govern how individual diagnostic labels are used. By formalizing these standards, and examining health policy practices in light of them, we can modulate our commitment to “fibromyalgia” and other illness definitions. This basic approach, I argue, is one that policy analysts might use in other situations involving highly unstructured problems. In the second part of this dissertation, I use this framework to evaluate the medical and policy uses of “chronic fatigue syndrome” (CFS), an illness construct originally defined by the CDC in 1988. Drawing on a multi-layered content analysis of about 300 medical and policy documents, and using AIDS as a comparison case, I examine whether the ways in which CFS has been used in policy discourse and practice have been consistent with the standards on illness label use. I find that often they have not been. Among other things, “CFS” has been used as an explanation for patients’ symptoms, portrayed as the cause of various social problems, and made a basis for disability benefits despite lacking the etiological content that would have justified these uses of the label. In part three, I take up the question of how it is CFS came to play this role in policy. I argue that it was through a slow process of reification. The CDC originally defined CFS as a research construct that would have to be validated later with physical findings. As medical and policy actors made repeated use of this construct, however, it became embedded in new discursive patterns that dramatically weakened the specificity of its conceptual relationship to nature. This made it possible to treat CFS as an objectively existing disease and make causal claims about it despite its lack of etiological content. This dissertation makes a number of contributions. In terms of policy recommendations, it suggests that CFS has been significantly overused as a mechanism for structuring the policy response to chronic fatigue. To prevent similar situations from arising in the future, the CDC and medical community should consider creating formal mechanisms to encourage adherence to the standards on illness label use. On a theoretical level, my findings expand our understanding of how science and politics interact in the policy process. Whereas we might think of basic scientific facts and objects as things that ground science-politics interactions, the case of CFS shows that this relationship can be reversed, with dysfunctional results.
Jos Raadschelders (Committee Chair)
Anand Desai (Committee Member)
David Landsbergen (Committee Member)
Alex Wendt (Committee Member)
379 p.
Health Care; Medicine; Public Administration; Public Health; Public Policy
public policy; health policy; policy analysis; chronic fatigue syndrome; AIDS; medical diagnoses; discourse analysis; content analysis

Recommended Citations

Citations

  • Roberts, A. N. (2017). The Construction of Illness Categories in Medicine and Public Policy: AIDS, Chronic Fatigue Syndrome, and the Problem of Reification [Doctoral dissertation, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1511872977343143

    APA Style (7th edition)

  • Roberts, Alexander. The Construction of Illness Categories in Medicine and Public Policy: AIDS, Chronic Fatigue Syndrome, and the Problem of Reification. 2017. Ohio State University, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1511872977343143.

    MLA Style (8th edition)

  • Roberts, Alexander. "The Construction of Illness Categories in Medicine and Public Policy: AIDS, Chronic Fatigue Syndrome, and the Problem of Reification." Doctoral dissertation, Ohio State University, 2017. http://rave.ohiolink.edu/etdc/view?acc_num=osu1511872977343143

    Chicago Manual of Style (17th edition)

osu1511872977343143
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This open access ETD is published by The Ohio State University and OhioLINK.