The value of online support groups

Electronic support groups, patient-consumers, and medicalization: the
case of contested illness.

J Health Soc Behav. 2008 Mar;49(1):20-36.

Barker KK.

Department of Sociology, Oregon State University, Corvallis, OR
97331, USA. kristin.barker@oregonstate.edu

PMID: 18418983


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.
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Looking for a support group?

ME AROUND THE GLOBE

I have collected links to ME organizations around the globe. The site is in Swedish, but I think most people will be able to use the list of ME organisations. The organizations are grouped by country or continent. Se here: http://me-cfs.se/patient.htm

/Kasper, Sweden ( http://me-cfs.se  )