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This article illustrates the role electronic support groups play in consumer-driven medicalization. The analysis is based on an observational study of a year in the life of an electronic support group for sufferers of the contested illness fibromyalgia syndrome. The analysis builds on and extends scholarship concerning the growing influence of lay expertise in the context of medical uncertainty by showing how the dominant beliefs and routine practices of this electronic community simultaneously (and paradoxically) challenge the expertise of physicians and encourage the expansion of medicine's jurisdiction. Drawing on their shared embodied expertise, participants confirm the medical character of their problem and its remedy, and they empower each other to search for physicians who will recognize and treat their condition accordingly. Physician compliance is introduced as a useful concept for understanding the relationship between lay expertise, patient-consumer demand, and contemporary (and future) instances of medicalization.
The Internet is now a principal source of health and medical information. In 2002, for example, approximately 93 million American adults went online to search for information about their health (Fox and Fallows 2003; Wellman and Haythornthwaite 2002). A key component of what is now called "e-health" is electronic support groups (ESGs) for illness sufferers. Accessed as bulletin boards, newsgroups, listserves, and chat rooms, ESGs take the form of electronic postings in which individuals-in real or delayed time-write, send, and read textual messages. There are tens of thousands of illness ESGs and many millions of participants (Eysenbach et al. 2004; Fox and Fallows 2003). In effect, nearly any sufferer of nearly any condition can type his or her affliction into a search engine and electronically connect with a group of fellow sufferers.
Even as peer-to-peer ESGs have become a ubiquitous feature of the illness experience, we know remarkably little about them. According to a study published in the British Medical Journal, there is a paucity of evidence regarding their therapeutic efficacy and uncertainty about how, or even if, they can be evaluated in accordance with the clinical standards of evidence-based medicine (Eysenbach et al. 2004). ESGs, after all, are social phenomena, and must be studied, at least in part, using the tools and methods of social science. What is certain is that ESGs provide laypeople with unprecedented opportunities...