How and why patients made Long Covid

Felicity Callard and Elisa Perego

Social Science & Medicine, 2021, vol. 268, issue C

Abstract: Patients collectively made Long Covid – and cognate term ‘Long-haul Covid’ – in the first months of the pandemic. Patients, many with initially ‘mild’ illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than laid out in initial reports from Wuhan. Long Covid has a strong claim to be the first illness created through patients finding one another on Twitter: it moved from patients, through various media, to formal clinical and policy channels in just a few months. This initial mapping of Long Covid – by two patients with this illness – focuses on actors in the UK and USA and demonstrates how patients marshalled epistemic authority. Patient knowledge needs to be incorporated into how COVID-19 is conceptualised, researched, and treated.

Keywords: Chronic illness; Citizen science; COVID-19; Long Covid; Long-hauler; Patient activism; Patient groups; SARS-CoV-2 (search for similar items in EconPapers)
Date: 2021
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Citations: View citations in EconPapers (19)

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DOI: 10.1016/j.socscimed.2020.113426

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