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.

Cited by papers we hold 14

• Characteristics and impact of Long Covid: Findings from an online survey · 2022
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• Post-COVID-19-associated morbidity in children, adolescents, and adults: A matched cohort study including more than 157,000 individuals with COVID-19 in Germany · 2022
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• Prognostic Factors for Post-COVID-19 Syndrome: A Systematic Review and Meta-Analysis · 2022
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• Long COVID burden and risk factors in 10 UK longitudinal studies and electronic health records · 2022
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• Persistent COVID-19 symptoms in a community study of 606,434 people in England · 2022
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• Rehabilitation Interventions for Post-Acute COVID-19 Syndrome: A Systematic Review · 2022
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• Characterizing long COVID in an international cohort: 7 months of symptoms and their impact · 2021
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• Characterising long COVID: a living systematic review · 2021
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• Persistent neurologic symptoms and cognitive dysfunction in non‐hospitalized Covid‐19 “long haulers” · 2021
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• Investigation of Long COVID Prevalence and Its Relationship to Epstein-Barr Virus Reactivation · 2021
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• Incidence, co-occurrence, and evolution of long-COVID features: A 6-month retrospective cohort study of 273,618 survivors of COVID-19 · 2021
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• Symptoms, complications and management of long COVID: a review · 2021
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• Persistent neuropsychiatric symptoms after COVID-19: a systematic review and meta-analysis · 2021
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• Defining Post-COVID Symptoms (Post-Acute COVID, Long COVID, Persistent Post-COVID): An Integrative Classification · 2021
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