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How and why patients made Long Covid

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  • Callard, Felicity
  • Perego, Elisa

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.

Suggested Citation

  • Callard, Felicity & Perego, Elisa, 2021. "How and why patients made Long Covid," Social Science & Medicine, Elsevier, vol. 268(C).
    • Handle: RePEc:eee:socmed:v:268:y:2021:i:c:s0277953620306456
    DOI: 10.1016/j.socscimed.2020.113426
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    References listed on IDEAS

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    Cited by:

    1. Figueiredo, Bernardo & Sheahan, Jacob & Luo, Shiqi & Bird, Stephen & Wong Lit Wan, Dawn & Xenos, Sophia & Itsiopoulos, Catherine & Jessup, Rebecca & Zheng, Zhen, 2024. "Journey mapping long COVID: Agency and social support for long-hauling," Social Science & Medicine, Elsevier, vol. 340(C).
    2. Giuseppe Craparo & Valentina Lucia La Rosa & Elena Commodari & Graziella Marino & Michela Vezzoli & Palmira Faraci & Carmelo Mario Vicario & Gabriella Serena Cinà & Morena Colombi & Giuseppe Arcoleo &, 2022. "What Is the Role of Psychological Factors in Long COVID Syndrome? Latent Class Analysis in a Sample of Patients Recovered from COVID-19," IJERPH, MDPI, vol. 20(1), pages 1-14, December.
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    5. Kaplan, Kenton & Mendenhall, Emily, 2024. "Framing Long Covid through Patient activism in the United States: Patient, Provider, Academic, and Policymaker Views," Social Science & Medicine, Elsevier, vol. 350(C).
    6. Turner, Melody & Beckwith, Helen & Spratt, Tanisha & Vallejos, Elvira Perez & Coughlan, Barry, 2023. "The #longcovid revolution: A reflexive thematic analysis," Social Science & Medicine, Elsevier, vol. 333(C).
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    10. Mullard, Jordan C.R. & Kawalek, Jessica & Parkin, Amy & Rayner, Clare & Mir, Ghazala & Sivan, Manoj & Greenhalgh, Trisha, 2023. "Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review," Social Science & Medicine, Elsevier, vol. 320(C).
    11. Evan Xu & Yan Xie & Ziyad Al-Aly, 2023. "Long-term gastrointestinal outcomes of COVID-19," Nature Communications, Nature, vol. 14(1), pages 1-10, December.
    12. Roth, Phillip H. & Gadebusch-Bondio, Mariacarla, 2022. "The contested meaning of “long COVID” – Patients, doctors, and the politics of subjective evidence," Social Science & Medicine, Elsevier, vol. 292(C).
    13. Sarah Houben & Bruno Bonnechère, 2022. "The Impact of COVID-19 Infection on Cognitive Function and the Implication for Rehabilitation: A Systematic Review and Meta-Analysis," IJERPH, MDPI, vol. 19(13), pages 1-21, June.
    14. Bojovic, Neva & Geiger, Susi, 2023. "Epistemic and institutional recognition work in changing conditions of social visibility: Anosmia's journey from the shadows to the spotlight," Social Science & Medicine, Elsevier, vol. 338(C).
    15. Jacqueline A. Krysa & Sidney Horlick & Kiran Pohar Manhas & Katharina Kovacs Burns & Mikayla Buell & Maria J. Santana & Kristine Russell & Elizabeth Papathanassoglou & Chester Ho, 2023. "Accessing Care Services for Long COVID Sufferers in Alberta, Canada: A Random, Cross-Sectional Survey Study," IJERPH, MDPI, vol. 20(15), pages 1-14, July.
    16. Daniel M. Altmann & Catherine J. Reynolds & George Joy & Ashley D. Otter & Joseph M. Gibbons & Corinna Pade & Leo Swadling & Mala K. Maini & Tim Brooks & Amanda Semper & Áine McKnight & Mahdad Noursad, 2023. "Persistent symptoms after COVID-19 are not associated with differential SARS-CoV-2 antibody or T cell immunity," Nature Communications, Nature, vol. 14(1), pages 1-9, December.
    17. Leoni-Johanna Speichert & Adam Schweda & Oliver Witzke & Margarethe Konik & Hana Rohn & Mark Stettner & Venja Musche & Klaas Herchert & Madeleine Fink & Sheila Geiger & Alexander Bäuerle & Eva-Maria S, 2022. "Fear of Death during COVID-19 Does Not Explain Post-Infection Depression Symptoms beyond Reported Symptoms during the Infection in COVID-19 Survivors," IJERPH, MDPI, vol. 19(21), pages 1-10, October.
    18. Matthew Whitaker & Joshua Elliott & Marc Chadeau-Hyam & Steven Riley & Ara Darzi & Graham Cooke & Helen Ward & Paul Elliott, 2022. "Persistent COVID-19 symptoms in a community study of 606,434 people in England," Nature Communications, Nature, vol. 13(1), pages 1-10, December.

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