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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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    1. Dumit, Joseph, 2006. "Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses," Social Science & Medicine, Elsevier, vol. 62(3), pages 577-590, February.
    2. Nisreen A. Alwan, 2020. "A negative COVID-19 test does not mean recovery," Nature, Nature, vol. 584(7820), pages 170-170, August.
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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).
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    5. 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.
    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).
    7. 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.
    8. Rohitash Chandra & Ayush Jain & Divyanshu Singh Chauhan, 2022. "Deep learning via LSTM models for COVID-19 infection forecasting in India," PLOS ONE, Public Library of Science, vol. 17(1), pages 1-28, January.
    9. Sætra, Henrik Skaug, 2022. "The ethics of trading privacy for security: The multifaceted effects of privacy on liberty and security," Technology in Society, Elsevier, vol. 68(C).
    10. Wild, Cervantée & MacLean, Alice & Nettleton, Sarah & Hunt, Kate & Ziebland, Sue, 2024. "The double invisibility of Long Covid in children," Social Science & Medicine, Elsevier, vol. 347(C).
    11. 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).
    12. 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.
    13. 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.
    14. Webb, Erin & Hernández-Quevedo, Cristina & Williams, Gemma & Scarpetti, Giada & Reed, Sarah & Panteli, Dimitra, 2022. "Providing health services effectively during the first wave of COVID-19: A cross-country comparison on planning services, managing cases, and maintaining essential services," Health Policy, Elsevier, vol. 126(5), pages 382-390.
    15. 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).
    16. Paul B. Perrin & Daniela Ramos-Usuga & Samuel J. West & Kritzia Merced & Daniel W. Klyce & Anthony H. Lequerica & Laiene Olabarrieta-Landa & Elisabet Alzueta & Fiona C. Baker & Stella Iacovides & Mar , 2022. "Network Analysis of Neurobehavioral Symptom Patterns in an International Sample of Spanish-Speakers with a History of COVID-19 and Controls," IJERPH, MDPI, vol. 20(1), pages 1-11, December.
    17. 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.
    18. 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).
    19. 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.

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