Thread by @apresj20

🔴📩📢In its first opinion, the French 🇫🇷 Scientific Committee #COVARS whose role is to anticipate and prevent health crises and their societal consequences, attributes #LongCOVID, as well as other post-infectious syndromes, to psychosomatic disorders, without scientific basis🧵

As a collective of patients with Long COVID, we feel it essential to voice our dissent with #COVARS on this matter.

Almost two years into the pandemic, advances in research demonstrate that #SARSCoV2 infection affects multiple organ systems. 2/

The existence of Long COVID, both in children and adults, has been established for almost two years.

Persisting symptoms have been termed “post-acute sequelae of Covid” (PASC) or Long COVID, and been described in thousands of studies
(see : apresj20.fr/veille-scienti…). 3/

The neurological, immunological, cardiovascular, and renal consequences, among others, are not in dispute among the international scientific community, contrary to what is stated in #COVARS’ opinion. 4/

The pathophysiological causes of long Covid are still to be further investigated and refined.
However, a consensus on certain elements has been made:

👉the capacity of #SARSCoV2 to damage the blood-brain barrier, directly or indirectly via inflammation; 5/

👉the virus’s capacity to infect astroglia, nutritive cells of the neurons, whose dysfunction can be objectively measured via cerebral imagery, and which correlates to the neurological symptoms reported by patients; 6/

👉immune dysregulation, leading to alterations in the endothelial cells that line blood vessels;
👉increasing evidence of viral reservoirs, most notably in the central nervous systems and digestive systems, of a considerable portion of patients with Long COVID. 7/

#COVARS’ mission as a scientific body is to inform government through rigorous analysis of the breadth of scientific research, while respecting the basic rules of science with integrity, transparency, and cooperative interaction. 8/

Thus, #COVARS’ construction of its recommendations, not on the basis of international scientific consensus, but upon a theory that 1) has little representation in the literature, 9/

2) has no solid data supporting it and 3) has not appeared in any notable review, is seriously harmful to patients. 10/

This position is especially egregious as leaders of health organizations throughout the world, such as @DrTedros, Director of @WHO, and Dr. Anthony Fauci, Director of the #NIAID and chief medical advisor to President Joe Biden, urge nations to carefully appraise 11/

the very serious public health threat that Long COVID poses and to take action commensurate with the devastating nature of the illness. 12/

France 🇫🇷 cannot construct its public health policy on the basis of unorthodox scientific theory, which has been disputed both at the national level &internationally.
This would create an inequality in patient care, which would conflict with established scientific knowledge. 13/

It should be noted that Long COVID, an illness resulting from COVID infection, affects between 10% and 20% of those having contracted the virus, to varying degrees, sometimes with severe or even very severe incapacitating forms, 14/

and that its symptoms can be debilitating and long-lasting.

Therefore, it is imperative that funding be allocated in order to support the care that patients and caretakers affected by this chronic, long-term illness, require. 15/

Finally, this opinion is contrary to the recommendations issued abroad (e.g. @CDCgov, @Nice) but also in France since February 2021 with the 🇫🇷 High Authority for Health (@HAS_sante) 16/

The latter’s recommendations were the result of a collective effort made by health professionals and by patient organizations, which presented very different diagnostic and therapeutic recommendations. 17/

Given this context, as patient organizations, we find the promulgation of a rogue medical theory by a committee as influential as #COVARS to be senseless.
#COVARS’ opinion will have a disastrous effect on public health in France🇫🇷, as well as an adverse socio-economic impact. 18/

Opinions such as this have a direct and nefarious effect on decisions regarding research, patient care, as well as government budgets and prevention campaigns relating to Long COVID and other post-infectious syndromes.

We have requested to meet with the #COVARS committee. 19/

A committee comprised of "independent counsel whose objective is to inform public policymakers" should respect the fundamental principles of science and democratic health policy, 20/

so as not to risk public confidence regarding political decisions that are driven by scientific recommendations that are unsupported, or risk the quality of life of millions of patients and caretakers." 21/

👉The teams of @apresj20 association & of the Covid 19 au Long cours and Pediatric Long Covid collectives @co19longcours @lilystbarth

Our press release (in french): apresj20.fr/_files/ugd/9a4…

#COVARS #BrigitteAutran @FrcsBraun @Elisabeth_Borne @agnesfirmin @Sante_Gouv @Seb_Delescluse @sretailleau @sup_recherche @HAS_sante @SantePubliqueFr @Assur_Maladie @olivierveran @gouvernementFR

@SCauchemez @lescure_xavier @PIFOP @ContentiJulie @didierFontenil @veronique_loyer @melanieheard11 @YvanieCaille @Renalooo
@CoordoTRT5

@LongCOVIDEurope @LongCovidSOS @long_covid @LongCOVIDPhysio @LongCovidItalia @patientled @itsbodypolitic @Dr2NisreenAlwan @elisaperego78 @longcovidspain @loscharlos @LongCovidKids @ahandvanish @darrenabrown @PutrinoLab @VirusesImmunity @WesElyMD @zalaly @longcovidwork

@LongCOVIDEurope @LongCovidSOS @long_covid @LongCOVIDPhysio @LongCovidItalia @patientled @itsbodypolitic @Dr2NisreenAlwan @elisaperego78 @longcovidspain @loscharlos @LongCovidKids @ahandvanish @darrenabrown @PutrinoLab @VirusesImmunity @WesElyMD @zalaly @longcovidwork @CovidSolidarit1 @ShaneyWright @MeetJess @14daystochange @LongCovidCH @LongDeutschland @LongCovidCanada @CovidComunidad @covidpersisarg @LongCovidAdvoc

@LongCOVIDEurope @LongCovidSOS @long_covid @LongCOVIDPhysio @LongCovidItalia @patientled @itsbodypolitic @Dr2NisreenAlwan @elisaperego78 @longcovidspain @loscharlos @LongCovidKids @ahandvanish @darrenabrown @PutrinoLab @VirusesImmunity @WesElyMD @zalaly @longcovidwork @CovidSolidarit1 @ShaneyWright @MeetJess @14daystochange @LongCovidCH @LongDeutschland @LongCovidCanada @CovidComunidad @covidpersisarg @LongCovidAdvoc @WHO @WHO_Europe @DrTedros @hans_kluge @diazjv @mvankerkhove

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@research_long @MVGutierrezMD @AnilvanderZee @james__glen @EleniIasonidou @DrMark_Faghy @kathrynsbach @RougeMatisse @RaviHVJ @D_Bone @CovidGalicia_es @OTforLC @lesleymacniven @Know_HG @Carrie_McGinn @alitwy @KunstJonas

@research_long @MVGutierrezMD @AnilvanderZee @james__glen @EleniIasonidou @DrMark_Faghy @kathrynsbach @RougeMatisse @RaviHVJ @D_Bone @CovidGalicia_es @OTforLC @lesleymacniven @Know_HG @Carrie_McGinn @alitwy @KunstJonas @bcdelaney1 @LongCovidTR @longcovidfdn @longcovidrese @LC_UK_Action @LongCovidPapers @maosbot @fitterhappierAJ @michelle_monje @CovidComunidad @long_haulers @calirunnerdoc @OnTapPhysio @j_b_kennedy @Gronnet @shaun_qureshi @MBVanElzakker @AcpeCovid @fearnley_k @microbeminded2

@K_Bishof @LongCovidRo @GreeceLck @priyakamal @LongCovidNews @Tortillou @fi_lowenstein @LisaAMcCorkell @ItsAngInLA @SimonDecary @ChantalBritt @ChantalSomm @MillionsMissgFr @Vickyvdtogt @LongCOVIDnetwk

@NoLongCovid @C19LH_Advocacy @maxwele2 @chiluvs1 @LongCovidOT @SessionsTlc @Amy_Ant @Long_COVID_All @martinmckee @LaylaMoran @JCeoltaSmith @GinaAssaf @COVID19persist1 @LongCovidNZ @longcovidAT @pandemicaid_net @VirusesImmunity

@DocStrain @lesleymacniven @ClareRayner6 @dgurdasani1 @longcovidbr @apuakoronaan @LongCovidNL @Savolainen_J @felicitycallard @preshitorian @ClaireHastie1 @keyeri @Doctor_IMF @amyismall @selkieO @DocAmali @AthenaAkrami