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. @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) https://osf.io/preprints/socarxiv/n8yp6/ via @OSFramework
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) https://osf.io/preprints/socarxiv/n8yp6/ 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.
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
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)
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
#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!)
#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.
#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")
#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.)
#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.
#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.
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
@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
