How and why patients made Long Covid

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 Wu...

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Bibliographic Details
Published inSocial science & medicine (1982) Vol. 268; p. 113426
Main Authors Callard, Felicity, Perego, Elisa
Format Journal Article
LanguageEnglish
Published England Elsevier Ltd 01.01.2021
Pergamon Press Inc
Pergamon
Subjects
Advocacy
Chronic Disease
Chronic illness
Citizen science
COVID-19
COVID-19 - epidemiology
COVID-19 - therapy
Humans
Illnesses
Long COVID
Long-hauler
Mapping
Pandemics
Patient activism
Patient groups
Patients
Patients - psychology
SARS-CoV-2
Short Communication
Terminology as Topic
United Kingdom - epidemiology
United States - epidemiology
United States
United Kingdom
Chronic illness
COVID-19
Patient groups
Long-hauler
SARS-CoV-2
Citizen science
Long Covid
Patient activism
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Summary: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. •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.
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ISSN:0277-9536
1873-5347
1873-5347
DOI:10.1016/j.socscimed.2020.113426