OREGON STATE UNIVERSITY

Study follows frustrated patients in chatrooms

Center for the Humanities Newsletter Photo
Kristin Barker

During the past two decades more than ten million Americans, mostly women, have been diagnosed with chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity. Known as “functional somatic syndromes,” these conditions share a host of symptoms. They also share the negative distinction of being viewed with suspicion by many in the mainstream medical community.

“By definition, functional somatic syndromes are not linked to any known organic abnormality, and hence many physicians approach these diagnoses with a considerable degree of skepticism,” said Kristin Barker, a Research Fellow and assistant professor of sociology at OSU. “The fact that functional somatic syndromes respond poorly to established medical treatments only further fuels suspicions.”

In simplest terms, what is at issue in the minds of many clinicians is whether the symptoms are “real,” that is, have physical rather than psychosomatic origins. For the millions of sufferers, who commonly experience chronic pain, fatigue, headaches, sleep irregularities, and mood disorders, such skepticism is highly frustrating, and it has led patients to turn in huge numbers to a relatively new source of help--Internet newsgroups, listserves and chatrooms where they can talk to others in the same situation.

“There are anecdotal reports from participants that these electronic support groups provide information and support that significantly alleviate symptoms and the self-discrediting impact of living with a contested illness,” said Barker, who is the author of The Fibromyalgia Story: Medical Authority and Women’s Worlds of Pain (Temple UP, 2005). “In sharp opposition to this assessment, skeptical clinicians accuse these groups of contributing to the spread of functional somatic syndromes by circulating medical misinformation twenty-four hours a day, seven days a week, to the worried and anxious.”

The charge is that the groups encourage maladaptive illness behavior, that is, the individuals focus on proving they are ill through solidarity with others who are similarly ill, and encourage undiagnosed sufferers to shop for “friendly” doctors willing to diagnose them with a functional somatic syndrome.

Little is actually known about the functioning and consequences of the electronic support groups, but interest in them is high, in part because of the soaring personal, social, health care and economic costs associated with the illnesses. To study the groups, however, does not fit standard evidence-based research methods, such as randomized and controlled double-blind studies, using placebos, or placing subjects deliberately in groups as test individuals.

“And clinicians will never be able to meaningfully disentangle the effects of group participation as distinct from the many other ‘interventions’ patients use to manage chronic illness,” said Barker. The problem is that the groups represent naturally occurring social phenomena rather than technologically based therapeutic interventions.

This has led Barker to devise a study that employs electronic, text-based ethnography to analyze a year in the life of a fibromyalgia online group, pseudonymously dubbed The Fibro Spot. The Fibro Spot is an open bulletin board system accessible to anyone with an online computer, to read and add postings without being a subscriber. It is typical of hundreds of lay-operated online fibromyalgia groups that have emerged over the past several years. Barker will download an entire year’s postings for analysis with suitable software.

“In addition to a general exploration of The Fibro Spot as a cybercommunity with its own distinctive cultural practices, this project will specifically address the role that these kinds of groups and this new technology play in shaping our cultural beliefs about chronic suffering, illness, and disease. A principal question will focus on whether and how these groups contribute to ‘medicalization’—that is, to the process by which human experiences that are neither inherently nor fully medical in character come to be understood as essentially medical.”

Because electronic ethnography is still in its infancy, said Barker, a considerable portion of her study will be devoted to exploring the applicability of alternative methods of textual analysis to the investigation of online groups. “The contribution of this project is, therefore, not only one of adding to our understanding of the role the groups play in the experience of functional somatic syndromes, but also one of expanding the repertoire of methods available to the study of cybercommunities and cybertexts more generally.”