Short communication
How and why patients made Long Covid

https://doi.org/10.1016/j.socscimed.2020.113426Get rights and content
Under a Creative Commons license
open access

Highlights

  • Patients made visible the persistence and heterogeneity of COVID-19 symptoms.

  • Patients experiencing long-term symptoms (‘long-haulers’) made Long Covid.

  • Long Covid challenges early clinical and governmental assumptions about Covid.

  • Knowledge travelled from patients through media to formal health and policy channels.

  • Patient expertise and knowledge should be incorporated in the pandemic evidence base.

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

Cited by (0)