Small Wins Matter in Advocacy Movements: Giving Voice to Patients
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In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power. It is suggested that the mistreatment and negative attitudes that health care providers and others have towards those with chronic fatigue syndrome (CFS) is possibly due to the social construction of this illness as being a “Yuppie flu” disease. Institutional factors are identified that created these norms and attributions, as well as the multiple stakeholders and constituent groups invested in exerting pressure on policy makers to effect systemic change. This article also provides examples of how the field of Community Psychology, which is fundamentally committed to/based on listening to and giving voice to patients, is broadly relevant to patient activism communities. This approach focused, over time, on epidemiological studies, the name, the case definition, and ultimately the change in CFS leadership at the Centers for Disease Control and Prevention. Keys to this “small wins” approach were coalition building, use of “oppositional experts” (professionals in the scientific community who support patient advocacy goals) to challenge federal research, and taking advantage of developing events/shifts in power. Ultimately, this approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.
KeywordsSocial change Patient advocacy Community coalitions Chronic fatigue syndrome Myalgic encephalomyelitis
I appreciate the suggestions and editorial help of Molly Brown, David Glenwick, Meredyth Evans, Abby Brown, John Moritsugu, Nicole Porter, Jessica Hunnell, Valerie Anderson, Athena Lerch, Jocelyn Droege, Laura Hlavaty, Chris Keys, G. Anne Bogat, Judith Richman, Brad Olson, Jacob Tebes, Jo Ellyn Walker, Steve Everett, and Daryl Isenberg. A particular note of thanks to Dorothy Wall who helped me link this work to the larger patient advocacy movement.
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