How and why patients made Long Covid

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


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • COVID-19 / epidemiology
  • COVID-19 / therapy*
  • Chronic Disease
  • Humans
  • Patients / psychology*
  • Terminology as Topic*
  • United Kingdom / epidemiology
  • United States / epidemiology