How and why patients made Long Covid.
COVID-19
Chronic illness
Citizen science
Long Covid
Long-hauler
Patient activism
Patient groups
SARS-CoV-2
Journal
Social science & medicine (1982)
ISSN: 1873-5347
Titre abrégé: Soc Sci Med
Pays: England
ID NLM: 8303205
Informations de publication
Date de publication:
01 2021
01 2021
Historique:
revised:
03
10
2020
accepted:
05
10
2020
pubmed:
18
11
2020
medline:
6
1
2021
entrez:
17
11
2020
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 33199035
pii: S0277-9536(20)30645-6
doi: 10.1016/j.socscimed.2020.113426
pmc: PMC7539940
pii:
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
113426Subventions
Organisme : Wellcome Trust
ID : 209513/Z/17/Z
Pays : United Kingdom
Informations de copyright
Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.