Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US

Zavestoski, Stephen; Brown, Phil; McCormick, Sabrina; Mayer, Brian; D'Ottavi, Maryhelen; Lucove, Jaime C

doi:10.1016/s0277-9536(03)00157-6

Cited by 94 publications

(70 citation statements)

References 47 publications

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“…Patients seek legitimacy for their problems [39][40][41][42][43][44][45][46]. That is, they want to feel that the doctor accepts that the symptoms are real and warrant the doctor's attention.…”

Section: Contesting Patients' and Doctors' Agendas In Consultationmentioning

confidence: 99%

Conflict, collusion or collaboration in consultations about medically unexplained symptoms: The need for a curriculum of medical explanation

Salmon

2007

Patient Education and Counseling

135

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Section: Contesting Patients' and Doctors' Agendas In Consultationmentioning

confidence: 99%

Conflict, collusion or collaboration in consultations about medically unexplained symptoms: The need for a curriculum of medical explanation

Salmon

2007

Patient Education and Counseling

135

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“…This case study thus foregrounds a conflict between professional knowledge and lay experience, and how, in the context of such contestation, ESGs can play a crucial role in defining diffuse human suffering in medical terms and engendering patient-consumer demand for medical recognition that physicians are often reluctant to provide. The analysis, therefore, builds on and extends a body of scholarship concerning the growing influence of lay expertise in the context of medical uncertainty (Brown et al 2000;Kroll-Smith and Floyd 1997;Zavestoski et al 2004) by explicitly highlighting its propensity to promote (rather than challenge) medicalization.…”

mentioning

confidence: 99%

Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness

2008

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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.

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“…Indeed, recent accounts demonstrate how these movements have embraced, contested, and reconceptualized the hegemonic meanings given to particular health conditions such as HIV=AIDS (Bowker and Star 2000;Epstein 1996Epstein , 1997, deafness (Blume 1999), multiple chemical sensitivity (Kroll-Smith and Floyd 1997), Gulf War illness (Brown et al 2002;Zavestoski et al 2004a), pregnancy loss (Layne 2002), genetic disorders (Heath et al 2004;Rapp et al 2001;Taussig et al 2003), illnesses caused by the Bhopal chemical disaster (Fortun 2001), and breast cancer (Klawiter 1999;Zavestoski et al 2004b). Taken as a whole, however, this body of literature does not make disease classification and its consequences its primary focus.…”

Section: Disease Categories and Disease Kinships 103mentioning

confidence: 99%

“…Second, they often involve the formation of collaborations between activists, on the one hand, and scientists and health care professionals, on the other, that address an array of research, treatment, disease prevention, and funding issues. Other embodied health movements have focused on conditions such as asthma (Brown et al 2002), Down syndrome (Rapp et al 2001), dwarfing conditions (Taussig et al 2003), epidermolysis bullosa (Heath et al 1999), Gulf War illness (Brown et al 2002;Zavestoski et al 2004a), HIV=AIDS (Epstein 1996), and Marfan's syndrome (Heath 1997). 3.…”

Section: Notesmentioning

confidence: 99%

Disease Categories and Disease Kinships: Classification Practices in the U.S. Environmental Breast Cancer Movement

Ley¹

2006

Medical Anthropology

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U.S. breast cancer activists have increasingly focused their efforts on addressing environmental causes of the disease. These efforts have included raising public awareness about environmental risks, pushing for scientific research on environmental causes, and promoting more stringent environmental regulations. As part of this work, activists have consistently "classified" breast cancer within broader disease categories that shape how activists conceptualize and carry out their political agendas. In this paper I explore the role that three disease categories--women's health, cancer, and endocrine disruption--have played in the U.S. environmental breast cancer movement. In doing so, I also show how activists' classification practices are simultaneously "disease kinship" practices that are just as integral to the movement's efforts as are the disease categories to which they are bound. By examining the centrality of diseases classification and disease kinship practices to environmental breast cancer activism, my account demonstrates the potential benefits of conducting similar analyses of other health-based social movements.

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Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US

Cited by 94 publications

References 47 publications

Conflict, collusion or collaboration in consultations about medically unexplained symptoms: The need for a curriculum of medical explanation

Conflict, collusion or collaboration in consultations about medically unexplained symptoms: The need for a curriculum of medical explanation

Electronic Support Groups, Patient-Consumers, and Medicalization: The Case of Contested Illness

Disease Categories and Disease Kinships: Classification Practices in the U.S. Environmental Breast Cancer Movement

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