Patients as Knowledge Partners

a collaborative think piece

One of the great joys of working on Long Covid has been learning from others who have been working on contested health conditions for years. Coming together with some of them for this paper—as part of a burgeoning collective of scholars, practitioners, and patient-researchers—has been both incredibly fun and thought provoking. Take a look at this piece here (it’s open access!). The coauthors have written extensively on other challenges and health conditions, preceding Long Covid, and their thinking is useful for thinking about today. See some of their work below and look them up if you aren’t familiar with their writing.

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Here are our references for further reading

Carter, C. R. 2020. “Trauma at Home.” American Ethnologist 47 (2): 168–72. Carter, C. R. 2021. “It Is a ’White Disease’: ALS, Race, and Suffering in a Divided City” PhD diss, Washington University in St. Louis. https://openscholarship.wustl.edu/art_sci_ etds/2400.

Carter, C. R. 2022. “Gaslighting: ALS, anti-Blackness, and Medicine.” Feminist Anthropology 3 (2): 235–45.

Dumes, A. A. 2020a. Divided Bodies: Lyme Disease, Contested Illness, and Evidence-Based Medicine. Critical Global Health: Evidence, Efficacy, Ethnography. Durham: Duke University Press.

Dumes, A. A. 2020b. “Lyme Disease and the Epistemic Tensions of ’Medically Unexplained Illnesses.’” Medical Anthropology: Cross-Cultural Studies in Health and Illness 39 (6): 441–56.

Dumes, A. A. 2020c. “Putting Ethnographic Flesh on New Materialist Bones: Lyme Disease and the Sex/Gender Binary.” Feminist Anthropology 1 (2): 248–59.

Dumes, A. A. 2022. “Long Covid Holds a Mirror Up to Medicine.” New York Times. Available from: https://www.nytimes.com/2022/03/17/opinion/long-covid.html

Hsu, V. J. 2023a. “The Imperative of Lived Experience for ME/CFS and Long COVID Research: What to Make of Patient Stories.” SSM - Mental Health 5: 100291.

Hsu, V. J. 2023b. “Framing the Activists: Gender, Race, and Rhetorical Disability in Contested Illnesses.” Quarterly Journal of Speech: 1–23

Kaplan, K., and E. Mendenhall. 2024. “Framing Long Covid through Patient Activism in the United States: Patient, Provider, Academic, and Policymaker Views.” Social Science & Medicine 350: 116901.

Löwy, I. 2024. Viruses and Reproductive Injustice. Baltimore: Johns Hopkins University Press.

Mendenhall, E. 2019. Rethinking Diabetes: Entanglements with Trauma, Poverty, and HIV. Ithaca, NY: Cornell University Press

Moodie, M. 2018. “Unrest: Gender, Chronic Illness, and the Limits of Documentary Visibility.” Film Quarterly 71 (4): 9–15.

Moodie, M. 2020. When the Chronically Ill Go into Remission: Filmmaker Jennifer Brea’s Life after “Unrest”. Los Angeles Review of Books

Rogers, E. L. 2022. “Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS.” Medical Anthropology Quarterly 36 (3): 412–28.