2020 Citizen Science Event Book: #LongCovid
Creators
Description
The Chinese Version "2020 年公民科學事件簿:#長新冠(#Long Covid) ": https://pansci.asia/archives/370282
The English full text : https://details-or-fragments.blogspot.com/2023/12/LCEventBook.html
Long Covid comes from a "patient-created term" in the spring of 2020. On October 6, 2021, the WHO announced its official definition. Although it used "post-COVID-19 condition", the Long Covid is still the most common term. This bottom-up grassroots movement of public participation in scientific concepts in online communities has reached the social conscience of the public and driven scientific development, and finally led to the establishment of relevant policies and scientific progress. This is what sociologists called "citizen science".
- How did it all begin?
- Patient symptom stories: COVID-19 affects more than just the lungs
- Long COVID Citizen Campaign: Responses from health services
- The openness of online social media
The positive actions of these online community and the collective consensus reached are enough to convincingly prove to medical institutions, including the WHO, that Long Covid is a real disease despite the lack of traditional evidence-based medicine. A group of online citizens collectively wrote the first textbook on Long Covid in 2020. At this moment, we are witnessing the mass power of the online community, which not only promotes real changes in the real world, ensures recognition of medical care supply, but also stimulate a new scientific research stage.
Files
LC_ScienceStory-20231209.pdf
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(1.8 MB)
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Additional details
Identifiers
Related works
- Is identical to
- Dataset: 10.6084/m9.figshare.24781548 (DOI)
- Is original form of
- Publication: https://pansci.asia/archives/370282 (URL)
Dates
- Accepted
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2023-09-19
References
- [1] Lokugamage A, Rayner C, Simpson F, Carayon L. We have heard your message about long covid and we will act, says WHO. The BMJ. Published September 3, 2020.
- [2] Known "Long Haulers" so far cited in Perego's paper are tweets from June 2020: Amy Watson, patient convener of "Long Haul COVID Warriors," from when she was tested Derived from the trucker hat worn: https://twitter.com/katemeredithp/status/1277316840453267456
- [3] WHO: https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition
- [4] López -Hernández, Y., Monárrez -Espino, J., López, DAG et al. The plasma metabolome of long COVID patients two years after infection. Sci Rep 13, 12420 (2023)
- [5] HHS News: https://www.hhs.gov/about/news/2023/07/31/hhs-announces-formation-office-long-covid-research-practice-launch-long-covid-clinical-trials-through -recover-initiative.html
- [6] Gura , T. Citizen science: Amateur experts. Nature 496, 259–261 (2013).
- [7] Perego , Elisa, et al. " Why the patient-made term 'long covid' is needed ." Wellcome Open Research 5.224 (2020): 224.
- [8] Callard , Felicity, and Elisa Perego . "How and why patients made Long Covid . " Social science & medicine 268 (2021): 113426
- [9] Turner, Melody, et al. " The # longcovid revolution: A reflexive thematic analysis ." Social Science & Medicine (2023): 116130.
- [10] Perego , Elisa, and Felicity Callard . "Patient-made Long Covid changed COVID-19 (and the production of science, too) ." (Feb. 2021)
- [11] ICD-11 for Mortality and Morbidity Statistics: http://id.who.int/icd/entity/2024855916
- [12] Thread Reader App #CountLongCovid combined with "Six months ago" web page : https://threadreaderapp.com/convos/1308678318821199872 [404 error: 2023/12/10]
- [13] The Independent (16 December 2020), https://www.independent.co.uk/news/health/coronavirus-long-covid-ons-data-b1774821.html
- [14] WHO: A clinical case definition for post COVID-19 condition in children and adolescents by expert consensus , 16 February 2023
- [15] Russell, David, et al. " Support amid uncertainty: Long COVID illness experiences and the role of online communities." SSM-Qualitative Research in Health 2 (2022): 100177.