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. 2021 Jan:268:113426.
doi: 10.1016/j.socscimed.2020.113426. Epub 2020 Oct 7.

How and why patients made Long Covid

Felicity Callard  1 , Elisa Perego  2
Affiliations

How and why patients made Long Covid

Felicity Callard et al. Soc Sci Med. 2021 Jan.

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: COVID-19; Chronic illness; Citizen science; Long Covid; Long-hauler; Patient activism; Patient groups; SARS-CoV-2.

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