Thread by @elisaperego78

I had the pleasure to present (virtually) at @winslow_la conference on Covid activism today. My talk "Canaries in the coal mines. Patient activism in early Covid epicenters" offered snapshots of survivors' advocacy leading to #LongCovid recognition

A thread

#ConfWinslowCovid24

Pandemics are history making events. The way we record pandemic history has huge implications for public health, public safety, preparedness, prevention, justice, patient rights. A key historical aspect of this pandemic is patient activism, which redefined how Covid is understood

Covid survivors in the first wave are the canaries in the coal mines: often abandoned at home with no medical care, in collapsed healthcare systems, they/we raised the alarm about the true nature of Covid, and brought #LongCovid to light

connectedvoice.org.uk/news-and-infor…

With 7—30 million Covid deaths and 65—400 million estimated #LongCovid cases so far, the Covid pandemic is, in my opinion, one of the greatest health disasters in recent/recorded history, especially if we acknowledge the prodigies of modern medicine

osf.io/u3bfy

#LongCovid is part of the history of this immense pandemic tragedy. But it's also a story of landmark collective, grassroots, international activism. Long Covid was named, identified and defined by patients themselves in 2020

ncbi.nlm.nih.gov/pmc/articles/P…

#LongCovid is the patient made term for the long-term symptoms, signs and sequelae of SARS-CoV-2 infection. As a concept it focuses on prolonged multi-system disease and the prolonged disease process triggered and potentially driven by such infection

#LongCovid was actively contesting the presentation we received of Covid in early 2020 by many sources: a "short", "mild", "mostly respiratory disease" in many, especially the "young and healthy", who were to recover in 2-6 weeks maximum. Death was for the "old and frail"

Early reports of persistent symptoms, and of a Covid illness which wasn't "mild", "respiratory only" and "short", even in the "young"/"healthy", started to emerge from early epicenters by March—April 2020. These reports often came from Twitter and socials

ncbi.nlm.nih.gov/pmc/articles/P…

To raise awareness of prolonged Covid illness and severe Covid even in those left home with no care, survivors made use of hashtags and patient made terms like #mildcovid (used ironically), "long haulers" (by Amy Watson), #apresJ20 (beyond the 20th day by @lapsyrevoltee)

@lapsyrevoltee In May 2020, reports of prolonged disease were multiplying. Prof Felicity Callard blew up the concept of "mild Covid" in @somatosphere (8 May). A team of patients in the US produced a survey of persistent symptoms (11 May). The name and hashtag #LongCovid coined on Twitter

@lapsyrevoltee @somatosphere By June—July 2020, #LongCovid was going viral and entering wider conversation in policymaking, the press, research. There was a dense process of collective knowledge building by patients on social media, which solidified Long Covid as a disease entity

pubmed.ncbi.nlm.nih.gov/37573677/

@lapsyrevoltee @somatosphere Support groups by patients for patients were being created like @apresj20 @long_covid @LongCovidSOS. @WHO recognized #LongCovid after a meeting with advocates on 21 August 2020

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO In September—October 2020, the history of #LongCovid was first published as a peer-reviewed publication (Callard and Perego). Perego, Callard et al., (both all patient-made teams) provided a first description of the disease's mechanisms, definition, and challenges ahead

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO On 7 October 2020, the prominent scientific journal @Nature wrote an editorial in support of patient-driven research and patient involvement in #LongCovid. Covid survivors and allies were continuing their fight for recognition including in @LongCovidKids

nature.com/articles/d4158…

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids By December 2020—February 2021, reports on prolonged symptoms and sequelae by patients/patient-driven team do not abate. There are papers, preprints, meetings with policymakers, reports on social media of severe long-term effects, often ahead of conventional medicine

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids At the end of January 2021, e.g. @MartaEsperti (@LongCovidItalia) and I are part of the Long Covid Italia Open Day with medical professionals, journalists, policymakers: Italy is soon the first/among first countries to recognize Long Covid with the patient made name (Long Covid)

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia In February—April 2021, patient-researchers now ~1 year post infection are still reporting hypoxia, cardiovascular disease, altered thrombotic/immune markers. @MartaEsperti groundbreaking SPECT-CT scan shows prolonged vascular lung pathology. Shared on Twitter, it goes viral

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia These brief snapshots are part of a much wider story: Covid/ #LongCovid activism from early epicenters like Lombardy/Italy, London and UK, Madrid and Spain, New York, Paris and France. This activism is key part of pandemic history. I hope it contributes to patient empowerment

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia This is a brief summary of a longer talk for @winslow_la conference on Covid activism. Thanks @Eerrnn and the organisation for the kind invitation to speak. Asked on question, I debated a bit more the complex challenges ahead, clinical trials lagging behind, need for funding /

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia @winslow_la @Eerrnn The need for prevention of SARS-CoV-2 infection (people attending in person had high quality masks/respirators 🔥), hope for better recognition of other (post) viral diseases like ME, factors that influenced fast recognition of #LongCovid (although with many challenges) /

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia @winslow_la @Eerrnn I mentioned the need for further LC recognition and new @theNASEM definition for #LongCovid in the US (while noting it's not exempt from some pitfalls in my opinion). I recognized the "moral injury" of living through abandonment and denial in this great pandemic tragedy

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia @winslow_la @Eerrnn @theNASEM Thanks very much for attending my talk in case and reading this thread

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia @winslow_la @Eerrnn *(post) infections including bacterial and other infections, not just viral.

@lapsyrevoltee @somatosphere @apresj20 @long_covid @LongCovidSOS @WHO @Nature @LongCovidKids @MartaEsperti @LongCovidItalia @winslow_la @Eerrnn @theNASEM Too many people to mention from the early days here just some in addition to thread @pre_historian @Dr2NisreenAlwan @CovidSolidarit1 @Ra2myl @covideuskal @MaryGR65 @DominicMoss13 @PlanetEarth_HD #covidpersistente and so many others. Apologies for missing people!