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How and why patients made Long Covid.

Felicity Callard1, Elisa Perego2

  • 1University of Glasgow School of Geographical and Earth Sciences, University of Glasgow, United Kingdom.

Social Science & Medicine (1982)
|November 17, 2020
PubMed
Summary

Long Covid, also known as Long-haul Covid, emerged early in the pandemic. Patient advocacy, particularly on social media, rapidly elevated this complex illness from patient experience to formal recognition.

Keywords:
COVID-19Chronic illnessCitizen scienceLong CovidLong-haulerPatient activismPatient groupsSARS-CoV-2

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Area of Science:

  • Medical Sociology
  • Public Health
  • Patient Advocacy

Background:

  • Long Covid (or Long-haul Covid) emerged in the early months of the COVID-19 pandemic.
  • Patients, even those with initially mild illness, reported prolonged and complex symptoms.
  • The condition gained visibility through patient-led online communities and advocacy.

Purpose of the Study:

  • To map the emergence and early trajectory of Long Covid.
  • To analyze how patients established authority and recognition for their experiences.
  • To highlight the role of patient knowledge in understanding and addressing the illness.

Main Methods:

  • Analysis of patient-generated evidence and advocacy efforts.
  • Focus on key actors and communication channels in the UK and USA.
  • Tracing the movement of Long Covid from patient networks to media and formal channels.

Main Results:

  • Long Covid was largely defined and disseminated by patients, notably through social media platforms like Twitter.
  • Patient advocacy successfully challenged initial, limited understandings of COVID-19's duration and complexity.
  • The illness rapidly transitioned from patient discovery to media and clinical attention.

Conclusions:

  • Patient knowledge and epistemic authority were crucial in defining Long Covid.
  • The rapid emergence of Long Covid illustrates the power of patient-led health movements.
  • Incorporating patient perspectives is essential for future COVID-19 research, conceptualization, and treatment.