Thread by @elisaperego78

I talked to @aboutlongcovid about the rise of #LongCovid as a patient-led advocacy movement in early to mid 2020. I also highlighted the key role of the patient community on social media in fighting misinformation and providing key support to survivors

aboutlongcovid.org/interview-with…

A note: the original piece was longer and was shortened for the blog format. The original story of #LongCovid rise is much longer! More info in the article attached. The role of digital advocacy is also more complex and deserves further attention

sciencedirect.com/science/articl…

Some key pointers: #LongCovid was born as a patient-led advocacy and research movement in 2020. The patient-made name Long Covid— as an hashtag— helped to link the grassroots advocacy movement, which was growing in spring 2020 in different countries, like with #apresJ20 in France

#covidpersistente in Spain—Spanish-speaking countries—and the US movement, where the patient-made terms long haulers #longhaulers and Long Haul Covid (by @Amy_Ant) were also highly influential

#LongCovid

I also want to mention here other international advocacy initiatives, which were very influential already the early pandemic months like @itsbodypolitic @patientled @apresj20 @apuakoronaan @longcoviditalia #MitCoronaLeben #koronaoire @apresj20 | list not exhaustive!

The patient-made name and hashtag #LongCovid went viral in late spring to early summer 2020. They were almost immediately adopted especially, initially, in the UK by strong advocates, patient-researchers and patient-led initiatives like @long_covid @ClaireHastie1 @james__glen

@CovidSolidarit1 @LongCovidSOS @selkieO @preshitorian @LongCovidScot @LongCovidWales @keyeri @felicitycallard @Dr2NisreenAlwan @LaurieStras @MartaEsperti

The long term effects of SARS-CoV-2 infection were openly recognized by the @WHO in August 2020 thanks to intense patient-led research and advocacy (which included many of the people and initiatives I listed above: list again not complete for word limits, but it was a big push!)

The advocacy initiative and now charity @LongCovidKids has been highly influential for the early and ongoing recognition of #LongCovid in children

#LongCovidKids