How and Why Patients Made Long Covid

Overview

Journal Soc Sci Med

Date 2020 Nov 17

PMID 33199035

Citations 344

Authors

Felicity Callard

Elisa Perego

Affiliations

Soon will be listed here.

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.

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References

Greenhalgh T, Knight M, ACourt C, Buxton M, Husain L . Management of post-acute covid-19 in primary care. BMJ. 2020; 370:m3026. DOI: 10.1136/bmj.m3026. View

Alwan N . Track COVID-19 sickness, not just positive tests and deaths. Nature. 2020; 584(7820):170. DOI: 10.1038/d41586-020-02335-z. View

Blease C, Geraghty K . Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy. J Bioeth Inq. 2018; 15(3):393-401. DOI: 10.1007/s11673-018-9866-5. View

Carfi A, Bernabei R, Landi F . Persistent Symptoms in Patients After Acute COVID-19. JAMA. 2020; 324(6):603-605. PMC: 7349096. DOI: 10.1001/jama.2020.12603. View

Manderson L, Wahlberg A . Chronic Living in a Communicable World. Med Anthropol. 2020; 39(5):428-439. DOI: 10.1080/01459740.2020.1761352. View

Kingod N . The tinkering m-patient: Co-constructing knowledge on how to live with type 1 diabetes through Facebook searching and sharing and offline tinkering with self-care. Health (London). 2018; 24(2):152-168. DOI: 10.1177/1363459318800140. View

The Novel Coronavirus Pneumonia Emergency Response Epidemiology Team . The Epidemiological Characteristics of an Outbreak of 2019 Novel Coronavirus Diseases (COVID-19) - China, 2020. China CDC Wkly. 2021; 2(8):113-122. PMC: 8392929. View

Lescure F, Bouadma L, Nguyen D, Parisey M, Wicky P, Behillil S . Clinical and virological data of the first cases of COVID-19 in Europe: a case series. Lancet Infect Dis. 2020; 20(6):697-706. PMC: 7156120. DOI: 10.1016/S1473-3099(20)30200-0. View

Epstein S . Impure science: AIDS, activism, and the politics of knowledge. Med Soc (Berkeley). 1996; :1-466. View

10.

Tenforde M, Kim S, Lindsell C, Rose E, Shapiro N, Files D . Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network - United States, March-June 2020. MMWR Morb Mortal Wkly Rep. 2020; 69(30):993-998. PMC: 7392393. DOI: 10.15585/mmwr.mm6930e1. View

11.

Mahase E . Covid-19: What do we know about "long covid"?. BMJ. 2020; 370:m2815. DOI: 10.1136/bmj.m2815. View

12.

Puntmann V, Carerj M, Wieters I, Fahim M, Arendt C, Hoffmann J . Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19). JAMA Cardiol. 2020; 5(11):1265-1273. PMC: 7385689. DOI: 10.1001/jamacardio.2020.3557. View

13.

Paterson R, Brown R, Benjamin L, Nortley R, Wiethoff S, Bharucha T . The emerging spectrum of COVID-19 neurology: clinical, radiological and laboratory findings. Brain. 2020; 143(10):3104-3120. PMC: 7454352. DOI: 10.1093/brain/awaa240. View

14.

Altmann D, Boyton R . SARS-CoV-2 T cell immunity: Specificity, function, durability, and role in protection. Sci Immunol. 2020; 5(49). DOI: 10.1126/sciimmunol.abd6160. View

15.

Marini J, Gattinoni L . Management of COVID-19 Respiratory Distress. JAMA. 2020; 323(22):2329-2330. DOI: 10.1001/jama.2020.6825. View

16.

Dumit J . Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses. Soc Sci Med. 2005; 62(3):577-90. DOI: 10.1016/j.socscimed.2005.06.018. View