Thread by @elisaperego78

Five years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing, grassroots movement of people who weren't recovering from Covid. Across the world, we were fighting for recognition and studying our own disease

I feel strange posting this again after five years of fighting, suffering, and a global, grassroot mobilization of Covid survivors, who changed how Covid was understood and communicated to the public

Far from being a short, respiratory illness in most, dangerous only for the "old and frail", as said in early guidelines, Covid was a prolonged, multi-system disease, which could be severe and even fatal also in the "young and healthy": #LongCovid

sciencedirect.com/science/articl…

In early to mid 2020, a grassroots, international, collaborative movement of Covid survivors brought into light the severity, variability and prolonged nature of symptoms and sequelae, many of which remained beyond the medical gaze at the time

#LongCovid

wellcomeopenresearch.org/articles/5-224

#LongCovid was first identified, named, defined by patients finding one other on social media like Twitter in early/mid 2020. By August 2020, Long Covid was openly recognised by WHO after intense advocacy-research which reached the highest echelons of policymaking

By mid 2020 to early 2021, #LongCovid was entering the biomedical literature. Guidelines were written. The mechanisms underlying the disease, the symptoms, the epidemiology were being described, studied, elucidated. Patients were at the forefront of advocacy and discovery

As of 2025, Covid and #LongCovid are among the most studied diseases in medical history, especially given the short timeframe. Thousands and thousands of scientific publications exist on LC, which show prolonged pathology and sequelae in basically all organs and body systems

But the Covid pandemic remains one of the deadliest pandemics in recorded history and a mass disabling event. 20 to 30 millions were estimated to have died from Covid as of 2023. Hundreds of millions are estimated to have experienced LongCovid

osf.io/preprints/soca…

I wrote again what I wrote 1 year ago today, the exact words: Too many have died. Too many remain with no access to medical care. Trials are lagging behind. There is no cure. People are losing their lives, livelihood, family, health and support networks.

We are still fighting for full recognition, for dignity, for treatments, for safety. The pandemic is not over, new variants are rising, people lack appropriate access to care. I am grateful for the massive wave of research, and fast recognition in 2020-1. Yet, so much suffering

I am grateful that a name created by a person living with the disease has become in so many contexts and publications the official name of the disease. A community carried us there. A collective movement of patients, a collective effort empowers a patient community #LongCovid

On this day, I want to express my gratitude and respect to all patients, advocates, patient-researchers and allies who brought us here. I also want to remember the lives lost, the pain, the suffering, the lack of care, the fight. Thinking about all of you. Thanks

#LongCovid

@LongCovidSOS @long_covid @apresj20 @LongCovidItalia @LongCovidKids @covideuskal @winslow_la @CovidSolidarit1 @LongCovidAdvoc @longcovidaragon @LongCovidAP @LongCovidChile @MartaEsperti @lapsyrevoltee #apresJ20 @AcpeCovid @ClaireCozler @james__glen @ShaneyWright

@LongCovidSOS @long_covid @apresj20 @LongCovidItalia @LongCovidKids @covideuskal @winslow_la @CovidSolidarit1 @LongCovidAdvoc @longcovidaragon @LongCovidAP @LongCovidChile @MartaEsperti @lapsyrevoltee @AcpeCovid @ClaireCozler @james__glen @ShaneyWright @felicitycallard @covid_madrid @DebHolloway @0bj3ctivity @1goodtern @_CatintheHat @LongCLand @CounsellingSam @LongCovidScot @LongCovidWales @IchBin_RO #covidpersistente #countlongcovid @Dr2NisreenAlwan @alitwy @Saffiya_Khan1 @_Lucibee @MeetJess @acrossthemersey

@LongCovidSOS @long_covid @apresj20 @LongCovidItalia @LongCovidKids @covideuskal @winslow_la @CovidSolidarit1 @LongCovidAdvoc @longcovidaragon @LongCovidAP @LongCovidChile @MartaEsperti @lapsyrevoltee @AcpeCovid @ClaireCozler @james__glen @ShaneyWright @felicitycallard @covid_madrid @DebHolloway @0bj3ctivity @1goodtern @_CatintheHat @LongCLand @CounsellingSam @LongCovidScot @LongCovidWales @IchBin_RO @Dr2NisreenAlwan @alitwy @Saffiya_Khan1 @_Lucibee @MeetJess @acrossthemersey @Antonio_Caramia @AlisonGeorge10 @BenjaminMateus7 @EvanBlake17 (thanks for the most comprehensive interview I ever made on LC and disease eradication/elimination)

@LongCovidSOS @long_covid @apresj20 @LongCovidItalia @LongCovidKids @covideuskal @winslow_la @CovidSolidarit1 @LongCovidAdvoc @longcovidaragon @LongCovidAP @LongCovidChile @MartaEsperti @lapsyrevoltee @AcpeCovid @ClaireCozler @james__glen @ShaneyWright @felicitycallard @covid_madrid @DebHolloway @0bj3ctivity @1goodtern @_CatintheHat @LongCLand @CounsellingSam @LongCovidScot @LongCovidWales @IchBin_RO @Dr2NisreenAlwan @alitwy @Saffiya_Khan1 @_Lucibee @MeetJess @acrossthemersey @Antonio_Caramia @AlisonGeorge10 @BenjaminMateus7 @EvanBlake17 @AnciraBecky @calirunnerdoc @LongCovidHell @LongCovidFight

@LongCovidSOS @long_covid @apresj20 @LongCovidItalia @LongCovidKids @covideuskal @winslow_la @CovidSolidarit1 @LongCovidAdvoc @longcovidaragon @LongCovidAP @LongCovidChile @MartaEsperti @lapsyrevoltee @AcpeCovid @ClaireCozler @james__glen @ShaneyWright @felicitycallard @covid_madrid @DebHolloway @0bj3ctivity @1goodtern @_CatintheHat @LongCLand @CounsellingSam @LongCovidScot @LongCovidWales @IchBin_RO @Dr2NisreenAlwan @alitwy @Saffiya_Khan1 @_Lucibee @MeetJess @acrossthemersey @Antonio_Caramia @AlisonGeorge10 @BenjaminMateus7 @EvanBlake17 @AnciraBecky @calirunnerdoc @LongCovidHell @LongCovidFight I added some of you who might be interested in this thread or were there in those early days or have been allies. Sorry if I haven't tagged everyone! Too many, and quite a few seem to have left this platform or I can't see them. My apologies for missing someone. And thanks again

@kasza_leslie @LongCovidNL @LongCOVIDPhysio @longcovidspain @jlerollblues @TheExtraFiles #longcovidawarness

More bibliography on #LongCovid as a patient-named disease entity and a social movement

sciencedirect.com/science/articl…