Militante santé @solenntango.bsky.social Asso @winslow_la 🐘 338ppm ancienne Prof de lycée & université. CL cardiovasc illness : "in ffp2 we trust"
Joined July 2009
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1 Aug 2024
Heureuse d’épingler 2 éléments auxquels j’ai participé : cet article👇
15 Jul 2024
😷 65 MILLIONS DE COVID LONG ET ÇA CONTINUE ! Parce que le silence tue mais que l'information donne du pouvoir,
@actupparis et @winslow_la
dressent un état des lieux de la pandémie de COVID toujours en cours.
👉 Lire notre texte et nos exigences ici : winslow.fr/65-millions-et-ca…
ALT Texte de l'image : 65 MILLIONS DE COVID LONG ET ÇA CONTINUE : un aperçu de la recherche COVID après 4 ans et demi de pandémie. Par Act Up-Paris et Winslow Santé Publique. Contenu de l'image : illustration adaptée du célèbre cartoon de l'artiste KC Green représentant un chien assis sur une chaise l'air hagard devant sa tasse de thé. Il est ici entouré de virus qui flottent dans l'air.
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« Scalability was a deliberate design consideration. »
« If successful, RECOVER-ENERGIZE will provide evidence for two symptom-targeted interventions based on PEM status: rehabilitation to enhance exercise capacity and quality of life in those without PEM,
Jun 12
Researchers : Lucinda Bateman, Bateman Center (that made the minimizing-LC-guide). Emily Taylor, solve ME. How on earth can LC orgs & advocates let them do this with LC funds.
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and pacing to reduce PEM severity and improve functional stability in those with PEM. »
There is a clear aim behind this study. It’s such a shame.
medrxiv.org/content/10.64898…
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Absence of PEM is not safety. And exercice don’t cure any non-stabilised chronically ill person. The results of this, if they don’t have any major event, will be so harmful for us LC patients.
#LongCovid #Minimisation
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Solenn TANGO retweeted
Long Covid Cases Hidden By Widespread Preference For Literally Any Other Diagnosis
ALT Someone struggling with fatigue Headline: Long Covid Cases Hidden By Widespread Preference For Literally Any Other Diagnosis STory by Marcel Morceaux and Hubert Bangford Photo from Unsplash
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Solenn TANGO retweeted
We all should be shocked of this trial. It’s basically dangerous for everybody suffering from LC.
I have to raise my severe concerns over this RECOVER trial. Exercise can be dangerous in Long Covid even without PEM (e.g. cardiovascular risk). "Structured exercise-pacing" can be dangerous with PEM-like manifestations. At any rate, exercise is no cure for Long Covid
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Solenn TANGO retweeted
I have to raise my severe concerns over this RECOVER trial. Exercise can be dangerous in Long Covid even without PEM (e.g. cardiovascular risk). "Structured exercise-pacing" can be dangerous with PEM-like manifestations. At any rate, exercise is no cure for Long Covid
Jun 12
RECOVER-ENERGIZE will test 2 Long COVID strategies based on PEM status. Rehab for exercise intolerance without PEM and structured pacing for PEM, with safeguards to avoid exertional harm.
medrxiv.org/content/10.64898…
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Jun 12
Researchers : Lucinda Bateman, Bateman Center (that made the minimizing-LC-guide). Emily Taylor, solve ME. How on earth can LC orgs & advocates let them do this with LC funds.
Jun 12
RECOVER-ENERGIZE will test 2 Long COVID strategies based on PEM status. Rehab for exercise intolerance without PEM and structured pacing for PEM, with safeguards to avoid exertional harm.
medrxiv.org/content/10.64898…
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Jun 12
@K_Bishof @C19LH_Advocacy maybe? can anyone tell me if some LC org in recover said ok for putting at risk LC folks without PEM (yes exercice is still a risk for them), while letting the others without help - with pacing ?
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Solenn TANGO retweeted
I actually think the Covid Conscious are amazing people. It takes a lot of strength to survive in a world that is almost wholly against you. Sticking to your guns and continuing to share what you know to be real.
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Solenn TANGO retweeted
Jun 12
This is extremely damaging. PEM is not the defining factor as to whether exercise is safe or dangerous in long Covid.
Jun 12
RECOVER-ENERGIZE will test 2 Long COVID strategies based on PEM status. Rehab for exercise intolerance without PEM and structured pacing for PEM, with safeguards to avoid exertional harm.
medrxiv.org/content/10.64898…
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Jun 12
Eeeet voilà. Honte sur celleux qui ont participé à ce narratif. 😤
Jun 12
RECOVER-ENERGIZE will test 2 Long COVID strategies based on PEM status. Rehab for exercise intolerance without PEM and structured pacing for PEM, with safeguards to avoid exertional harm.
medrxiv.org/content/10.64898…
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Solenn TANGO retweeted
La dernière chose dont on avait besoin c'est que Ruffin récupère le Covid Long pour la plus grande joie de Margulies (Printemps Républicain) et en confondant le Covid Long et l'EM 🙄🤦♀️ Les 2 millions (sous estimation) c'est bien 2 millions de Covid Longs (pas CL et EM).
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ALT Tweet de Johann Margulies, 11 juin 2026 ... Tellement reconnaissant pour ce post, Ruffin est à ma connaissance le premier politique d'envergure à parler du COVID long et de l'EM/SFC et à mettre ainsi cette question urgente de santé publique en lumière, qu'il en soit chaudement remercié! Tweet deFrançois Ruffin, 11 juin 2026: Covid long : 2 millions de Français abandonnés Derrière ce chiffre, il y a des vies brisées, des patients épuisés, souvent jeunes, contraints de renoncer à leur emploi, à leur autonomie, à leur existence sociale. J'attire l’attention de la ministre de la santé @stephanie_rist sur la situation dramatique des patients atteints de covid long et d’encéphalomyélite myalgique/syndrome de fatigue chronique (EM/SFC) en France. Jun 11, 2026 1,789 Views
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Solenn TANGO retweeted
Necessary reminder 🧵, as SARS-Cov-2 denial, misinformation surrounding LongCovid, and the distortion of this multisystemic disease while confronting psychologizers are reaching peak levels, also from individuals who should support us.
Jun 11
About Alan's article :
Do the people who constantly conflate CL with ME, decoupling LC from its cause and claiming it’s "too broad", "confusing" and so on, realise that they’re doing the same thing as the LC psychologisers, who also constantly try to detach LC from SARS-CoV-2 ?
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Solenn TANGO retweeted
Jun 10
"We shouldn't overreact before we have definitive proof."
It's a common argument in public health discussions, especially when new risks emerge and uncertainty remains.
But public health isn't a criminal trial.
The principle of "innocent until proven guilty" exists to protect people from unjust punishment. Pathogens are not people. Viruses don't have rights, intentions, or due process claims. They spread, mutate, disable, and kill while we debate evidence thresholds.
The precautionary principle offers a different framework: when there is a credible risk of serious harm, lack of complete scientific certainty is not a reason to delay protective action.
From asbestos and lead to tobacco and airborne disease transmission, history has shown the cost of waiting for absolute proof before acting.
In this new article, Naomi Bar-Yam explores why public health must be guided by precaution, not certainty, and what that means for emerging threats like Andes hantavirus.
Read the full article: whn.global/due-process-for-p…
#PublicHealth #GlobalHealth #HantavirusAndes #Hantavirus #AndesHantavirus #HealthPolicy #Pandemic #AirborneTransmission #Ebola #COVID #COVID19 #LongCOVID #InfectionPrevention
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Jun 11
About Alan's article :
Do the people who constantly conflate CL with ME, decoupling LC from its cause and claiming it’s "too broad", "confusing" and so on, realise that they’re doing the same thing as the LC psychologisers, who also constantly try to detach LC from SARS-CoV-2 ?
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Jun 11
David Tuller’s answers to Alan’s article are so illustrative of that.
Allowing to Alan all the things that doesn’t fit the mix, and never linking LC to the pandemic and its health burden, while disqualifying the LC etiological définition chosen by patients themselves.
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Jun 11
Ex : we know now that LC patients has an elevated associated risk of MACE. Nobody seems to care that brain retraining is « forgetting symptoms », getting used to it, which is dangerous here ? - advising this to pwLC, may also lead them to underestimate cardiovasc alarm bells
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