2020/10/07 by Felicity Callard, Elisa Perego · 1 voice · 14 citations
Medicine · Psychology · #COVID-19 and Mental Health #Intensive Care Unit Cognitive Disorders #Long-Term Effects of COVID-19
paper · doi:10.1016/j.socscimed.2020.113426
openalex publication_date 2020/10/07 · openalex created_date 2025/10/10 · openalex updated_date 2026/07/28
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.