Tag: marginalization

Post-acute neurological consequences of COVID-19: an unequal burden

COVID-19 and its neurological consequences particularly burden marginalized communities, and so can only be effectively treated by advancing health equity.

Our world has witnessed over 275 million confirmed cases of COVID-19 and over 5 million related deaths1. Marginalized communities everywhere continue to be disproportionately affected as the pandemic amplifies longstanding health and healthcare disparities. As an example, in the United States, members of the Black, Indigenous and Latino communities remain two to three times more likely to be infected with SARS-CoV-2, to be hospitalized with COVID-19 and to die from this disease2. Dismantling structural racism is necessary to improve neurological health, as greater attention is focused on understanding and addressing the post-acute neurological consequences of COVID-19, or the neurological manifestations of what is sometimes called long COVID.

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Source: Nolen, L.T., Mukerji, S.S. & Mejia, N.I. Post-acute neurological consequences of COVID-19: an unequal burden. Nat Med 28, 20–23 (2022). https://doi.org/10.1038/s41591-021-01647-5  (Full text)

Are ME/CFS Patient Organizations “Militant”?

Abstract:

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness.

However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications.

Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.

Source: Blease, C. & Geraghty, K.J. Are ME/CFS Patient Organizations “Militant”? Bioethical Inquiry (2018). https://doi.org/10.1007/s11673-018-9866-5

Toward a model of social course in chronic illness: the example of chronic fatigue syndrome

Abstract:

Retrospective, narrative accounts of illness experience in chronic fatigue syndrome provide the empirical basis for a preliminary conceptual model of social course in chronic illness. Qualities of distress interact with culturally specific expectations for social life and personal conduct to trigger microsocial processes of marginalization: role constriction, delegitimation, impoverishment, and social isolation.

Marginalizing processes are opposed by acts of resistance initiated by ill individuals and directed toward integration in social worlds. Social distance from the perceived centers of CFS sufferers’ interpersonal worlds expands and contracts with the changing predominance of marginalizing and resisting influences over time. Social course thus consists of successive, bi-directional movements along a ‘continuum of marginality’ by persons living lives with chronic illness.

 

Source: Ware NC. Toward a model of social course in chronic illness: the example of chronic fatigue syndrome. Cult Med Psychiatry. 1999 Sep;23(3):303-31. http://www.ncbi.nlm.nih.gov/pubmed/10572737

 

Sociosomatics and illness in chronic fatigue syndrome

Abstract:

OBJECTIVE: This study examines social processes that construct the course of chronic illness. Specifically, it identifies and describes mechanisms that constitute the process of role constriction in employment for individuals with chronic illness.

METHOD: Sixty-six persons meeting the Centers for Disease Control case definition of chronic fatigue syndrome (CFS) participated in a longitudinal study involving three waves of data collection over 3 years. Qualitative and quantitative methods were combined in the research, which included face-to-face semistructured interviews, telephone interviews, and self-report questionnaires. Materials presented in this study are drawn principally from the Year 1 face-to-face and telephone interviews.

RESULTS: When patterns of symptoms and of the illness course in CFS intersect with work requirements, they impede performance and place ill individuals at risk for job loss. Persons with CFS devise and implement specific strategies to resist role constriction and remain in the work force.

CONCLUSIONS: Role constriction is a social process of marginalization in chronic illness. Opposing forces of marginalization and resistance define the social course in chronic illness and suggest that chronicity can be thought of as a marginalized position in social space.

Comment in: Sociosomatics and illness in CFS. [Psychosom Med. 1999]

 

Source: Ware NC. Sociosomatics and illness in chronic fatigue syndrome. Psychosom Med. 1998 Jul-Aug;60(4):394-401. http://www.ncbi.nlm.nih.gov/pubmed/9710284