How and why patients made Long Covid
- PMID: 33199035
- PMCID: PMC7539940
- DOI: 10.1016/j.socscimed.2020.113426
How and why patients made Long Covid
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: COVID-19; Chronic illness; Citizen science; Long Covid; Long-hauler; Patient activism; Patient groups; SARS-CoV-2.
Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.
References
-
- All-Party Parliamentary Group on Coronavirus . 2020. 2nd Oral Evidence Session - All-Party Group on Coronavirus.https://www.youtube.com/watch?v=5osi_T7W8z0
-
- Alwan N. A negative COVID-19 test does not mean recovery. Nature. 2020;584(7820):170. - PubMed
-
- Alwan N. 2020. What Exactly Is Mild Covid-19? the BMJ. Available from:https://blogs.bmj.com/bmj/2020/07/28/nisreen-a-alwan-what-exactly-is-mil... Accessed 31 July 2020.
-
- Assaf G. 2020 11 May. COVID-19 Prolonged Symptoms Survey - Analysis Report.https://patientresearchcovid19.com/research/report-1/ Accessed 31 July 2020.
Publication types
MeSH terms
Grants and funding
LinkOut - more resources
Full Text Sources
Other Literature Sources
Medical
Miscellaneous