Thread by @elisaperego78

.@felicitycallard and I have a new paper on #LongCovid

We show how patient activism and research reshaped #COVID19 well ahead of conventional science 🧵

Patient-made Long Covid changed COVID-19 (and the production of science, too) osf.io/preprints/soca… via @OSFramework

#LongCovid is the term patients made to indicate the long-term symptoms and sequelae of #COVID19. Initial reports claimed Covid was a respiratory illness with estimated recovery in 2--6 weeks.

Patients built a global grassroot movement and successfully challenged this narrative.

Those with #LongCovid made key contributions to knowledge via multiple media, from Twitter to informal papers. Many of these risk exploitation/dismissal because they are outside the channels through which science is usually built

Thus, we bring solidity to patient made evidence

Those with #LongCovid helped reshap #COVID19 along multiple axes. We highlight some of them here

1. Multiple symptoms and disease pathways. SARS-CoV-2 infection is not a respiratory illness only. It's a multidimensional disease with variable pathways (e.g. gastric, neurological)

2. Phasing, tempo, duration. #COVID19 may not be a disease with recovery in 2--6 weeks.

#LongCovid underlines its cyclical and multiphasic nature; relapsing and remitting pattern; delayed peaks from onset; potential viral persistence beyond few days; delayed multi-organ attack

3. Disease classification.

#LongCovid moved covid beyond the pulmonary system and pneumonia severity.

It breaked down the "mild" #COVID19 category and conventional classification of patients in hospitalized vs non-hospitalized (many with severe illness were left at home!)

4. Naming of a new illness.

#LongCovid is a patient made term that moves, intentionally, beyond conventional categories of disease classification, such a chronic, post and syndrome.

It is collectively made. It doesn't take its name from a single, usually male, scientist.

5. Morbidity.

#LongCovid moved beyond early public health messages, which focused on mortality alone.

It brings attention to the devastating social and personal consequences of #COVID19. It's disability inclusive and rejects eugenics logics (the "fit and healthy will be fine")

6. Making children visible ⏩ #LongCovidKids

Those with #LongCovid have fought hard to show that children can be severely affected by #COVID19 as well as adults. As in the other instances above, conventional research has now proven this correct (see @surf4children et al.)

7. Ethical issues and the production of scientific knowledge.

#LongCovid challenges how science is built. Informal and "anedoctical" hypotheses and speculations by patients early in the pandemic have now been proven correct by multiple peer-reviewed publications.

Many risks of exploitation of patient-made data lie ahead. This extends to the scientific labour of those with #LongCovid, often unpaid or unrecognized.

We need new ways to ethically integrate patient contributions into the building of medicine. This goes beyond the pandemic.

This is just a short summary of the paper. @felicitycallard and I want to thank the whole #LongCovid community for their support and fight for recognition @Dr2NisreenAlwan @MartaEsperti @LongCovidSOS @long_covid @apresj20 @CPersistente @ahandvanish @apuakoronaan @itsbodypolitic

@Doctor_IMF @WHO @Know_HG @ClaireHastie1 @BirgitC @preshitorian @LongNetherlands @LongCovidKids @lagresti @Ellemarie_318 @LaurieStras @keyeri @LongCovidScot @LongCovidWales @DominicMoss13 @AthenaAkrami @patientled @angie_roo2 @itsanginLA @CovidSolidarit1 #apresJ20 #koronaoire

@Ra2myl @foret_bruno @Food_reward @NamChaRainbow @LongCovidPhysio @LongCovidCH @LongCovidNZ @PlanetEarth_HD @CPersistente @CovidFamilias #covidpersistente #MitCoronaLeben @OrianeLq @reverseyourmind

@katemeredithp @stuart_ross8 @james__glen @LeeDavidBowen
@MartaEsperti #LongCovidItalia @FrancesorFran @selkieO @DrTedros

Of course many others sorry if I forget someone! The #MECFS allies too of course e.g. @Frattgirl and many others!

@IMirifica @WoollerEmma @LaylaMoran @bcdelaney1 @UTc19LongHaul @AshHultman @TruthAbout_ME2 @FernRiddell @VirusesImmunity @docdrugztore @ninaeleformiche @AndreaStair @igor57092488

@gezmedinger @Daltmann10 @DocAmali @trishgreenhalgh

@emmera2