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Reposted by Asociación Long COVID Aragón

Long COVID Rise Up @longcovidriseup.bsky.social · 14/06/2026

🚨 Some time ago, we have written to the authors of the “Clinical Care Guide” (Bateman Center) to express our deep concern about its portrayal of #LongCOVID. While it addresses PEM, POTS & MCAS, it largely ignores the broader reality of this disease: 🔗 longcovidriseup.eu/bateman-letter/

longcovidriseup.eu

BATEMAN LETTER

A letter to the Bateman institute

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PSOE Aragón @aragonpsoe.bsky.social · 03/06/2026

Hemos mantenido una reunión con la Asociación Long Covid Aragón @longcovidaragon.bsky.social 😷 Apoyamos sus reivindicaciones y, por ello, desde el PSOE propondremos a las Cortes reconocer oficialmente esta enfermedad en todas las instituciones sanitarias.

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AraInfo @arainfo.bsky.social · 04/06/2026

Seguimiento multidisciplinar, más investigación, cubrir plazas vacantes y reforzar la atención sanitaria. Long COVID Aragón lleva al Parlamento una batería de propuestas para mejorar la respuesta pública ante una enfermedad que sigue afectando a miles de personas: arainfo.org/?p=328505

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AraInfo @arainfo.bsky.social · 07/06/2026

Long COVID Aragón vuelve a llamar a la puerta de las Cortes: “No podemos seguir esperando”: arainfo.org/long-covid-aragon-corte…

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 13/05/2026

📣 1 month left to submit! The 4th Long COVID International Conference takes place 12–13 Nov 2026 in Nice. Share your latest research and help shape the global discussion. Deadline: 12 June 2026 Submit: amededu.co/4rASrj6 #LongCOVIDIntl @academicmededu.bsky.social #LongCOVID

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 25/04/2026

🗣️ Acción pacífica pacientes franceses: hartos de que se piscologice su enfermedad, han tomado la palabra en una conferencia en la que se decía que la #CovidPersistente era algo psicológico, en contra de la evidencia científica existente, y los asistentes se lo han impedido. #LongCovidIsReal Gracias!

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Julie Lam @msjulieslam.bsky.social · 17/04/2026

Nothing about us without us.

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MaskTogetherAmerica @togetherwemask.bsky.social · 17/04/2026

“Nothing about us without us.” Delphine Crespo, President of Association of Long COVID Aragon @longcovidaragon.bsky.social explains what the Global Long COVID Declaration stands for. Watch #MaskTogetherAmerica LC Defense Series III. Support Long Haulers 🩵🤍🖤❤️‍🩹😷 masktogetheramerica.org/blog/long-co...

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Reposted by Asociación Long COVID Aragón

MaskTogetherAmerica @togetherwemask.bsky.social · 03/04/2026

Angela L. @lcawarenessint.bsky.social shares her struggle as a Long Hauler raising 2 kids who are also impacted by #LongCOVID, and one developed T1D after COVID. Watch #MaskTogetherAmerica LC Defense Series III. Support Long Haulers 🩵❤️‍🩹🫂😷 masktogetheramerica.org/blog/long-co... #LongCovidKids

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MaskTogetherAmerica @togetherwemask.bsky.social · 02/04/2026

"I’m fighting to improve my life and career while living with #LongCOVID an invisible battle that leaves us like ghosts in our own lives." Meet 2x-GRAMMY/EMMY nominee Nina Storey & 🐶Bubsie, stars of "Strangely Optimistic"—dramedy for ES Disability Film Challenge 🔗ℹ️ www.instagram.com/p/DWmqR8ykUg...

Nina Storey and her dog Bubsie. Nina is double-masking with a black KF94 over a mask with two KN95 filters while waiting outside for a veterinarian's appointment.

Nina Storey, playing the role of Nina in “Strangely Optimistic”, wearing a pink T-shirt, lies on the floor in a scene that shows the character fall and crash due to dysautonomia, a common Long COVID symptom. The Text shares the title and credits of the dramedy made for Easterseals Disability Film Challenge.

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Reposted by Asociación Long COVID Aragón

MaskTogetherAmerica @togetherwemask.bsky.social · 21/03/2026

Delphine Crespo, President of Association of Long Covid Aragon @longcovidaragon.bsky.social shares her understanding of Long COVID (LC), as a patient and LC Community rep in Spain. Watch #MaskTogetherAmerica LC Defense Series III. Support Long Haulers 🩵🤍🖤❤️‍🩹😷 masktogetheramerica.org/blog/long-co...

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MaskTogetherAmerica @togetherwemask.bsky.social · 16/03/2026

Angela L., Creator of Int. Long COVID Awareness Day @lcawarenessint.bsky.social shares how Mar 15 was chosen for the day of resilience and what the 3 colors on the LC ribbon stand for. Watch #MaskTogetherAmerica LC Defense Series III. Support Long Haulers 🩵🤍❤️‍🩹🫂 masktogetheramerica.org/blog/long-co...

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MaskTogetherAmerica @togetherwemask.bsky.social · 18/03/2026

Devin Russell, Co-Founder of Long COVID Foundation, shares his haunting experience living with #LongCOVID. Watch #MaskTogetherAmerica LC Defense Series III. Support Long Haulers 🩵🤍🖤❤️‍🩹🫂😷 masktogetheramerica.org/blog/long-co... @lcawarenessint.bsky.social

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MaskTogetherAmerica @togetherwemask.bsky.social · 15/03/2026

Responding to a question on whether “Long COVID” should be viewed as mysterious, Elisa Perego PhD @elisaperego78.bsky.social who coined the term, opposes classifying the multi-systemic condition as a “Mysterious” cluster of unexplained chronic symptoms. Watch: masktogetheramerica.org/blog/long-co...

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 12/03/2026

Queremos dar las GRACIAS de corazón al @realzaragoza.bsky.social y a su capitán, #FranchoSerrano, por el vídeo que grabaron ayer especialmente para el mes de la concienciación sobre la #COVIDPersistente. Su apoyo es un impulso enorme para todas las personas que conviven cada día con esta enfermedad

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AraInfo @arainfo.bsky.social · 09/03/2026

Seis años después de la pandemia, 2,4 millones de personas viven en el Estado español con covid persistente ‼️ Long Covid Aragón denuncia falta de reconocimiento, investigación y atención sanitaria y convoca concentración el 15 de marzo en Zaragoza: arainfo.org/?p=322997

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Winslow Santé Publique @winslowsp.bsky.social · 04/03/2026

When health communication remains outdated, the virus circulates freely and continues to cause damage. Millions of people are living with #LongCovid : they are a constant reminder of this. There is an urgent need to evolve. #Prevention #LongCovidAwareness

At the top, on a black background: aerosols.
Text: The Covid virus, SARS-CoV-2, is transmitted through the air via viral particles suspended in the air. Ventilation, air purification, and the use of FFP2 masks and UVC are effective means of prevention. No public awareness campaign in France sufficiently highlights this mode of transmission. Yet it is essential to prevent acute COVID, as well as the delayed consequences of this virus, particularly long COVID. Bottom, in large print: Ignorance is not a public health policy.

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Winslow Santé Publique @winslowsp.bsky.social · 04/03/2026

🔴 New poster diptych. COVID is transmitted through the air, and through ignorance. Ignorance of the data. Ignorance of blind spots. #PublicHealth Link : winslow.fr/ressource...

Text: You can't manage public health with outdated knowledge... Health authorities, if By refusing to adapt SARS-CoV-2 prevention measures. Larger text at bottom: Covid is transmitted through the air and through ignorance Image: An administrator sitting behind a desk, looking bored, behind an old computer.

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MaskTogetherAmerica @togetherwemask.bsky.social · 02/03/2026

Join #LongCOVIDAwareness discussions at Defense Series III, March 4, 2026, 4:30pm-9pm EST in honor of patients and allies tirelessly advocating for health justice in this historic struggle, 6 Q&A sessions will feature an extraordinary panel of speakers. masktogetheramerica.org/blog/long-co...

An invitation for everyone to register for Long COVlD Defense Series III on March 4, 2026, 4:30pm - 9:00pm EST. 6 Q&A sessions will feature an extraordinary panel of speakers, with their masked portraits showing inside frames that say “Support Long Haulers and Mask Together America”.
Schedule:
4:35 pm Delphine Crespo, President of Association of Long COVID Aragón
5:10 pm Dr. Ciara Steele, co-founder of Clean Air Advocacy Ireland (CAAI)
5:45 pm Pamela Morrison, Long COVID Advocacy Ireland
6:20 pm Elisa Perego PhD, Long COVID Rise Up expert member who coined the term Long COVlD
6:55 pm Angela L., Creator of International Long COVID Awareness Day
7:35 pm Devin Russell, Founder of Long COVID Foundation
Register to join: https://bit.ly/LCDefenseForum_Mar4

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MaskTogetherAmerica @togetherwemask.bsky.social · 02/03/2026

LCDefense III 4:35pm Delphine Crespo @longcovidaragon.bsky.social 5:10pm Dr. Ciara Steele @cleanairie.bsky.social 5:45pm Pamela Morrison @lcaireland.bsky.social 6:20pm Elisa Perego PhD @elisaperego78.bsky.social 6:55pm Angela L. @lcawarenessint.bsky.social 7:35pm Devin Russell Long COVID Foundation

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Long COVID Rise Up @longcovidriseup.bsky.social · 01/03/2026

🎬 🗣️ Launch of #LongCOVIDAwarenessMonth and its theme of the cardiovascular effects of Covid and #LongCovid, with this video to share! #LongCovidHeartbeats 👉 Every patient counts, every heartbeat counts. (Youtube channel with several languages : www.youtube.com/playlist?lis...)

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 01/03/2026

📣 En el marco del Día Internacional de la #COVIDPersistente #LongCovidAwarenessDay, convocamos una concentración: 📍 Plaza España, #Zaragoza 🕛 a las 12:00 horas 🩵 Os esperamos con familiares y amigos para que se nos visibilice 🫂 @lcawarenessint.bsky.social @longcovidriseup.bsky.social

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AMACOP Asociación Madrileña de Covid Persistente @covidmadrid.bsky.social · 17/02/2026

María, una de las más jóvenes de AMACOP Amiga, compañera, embajadora de los pacientes de Covid Persistente, Disautonomía y otras Enfermedades Raras Su positividad y alegría lo llenaba todo, aunque estuviese entrando y saliendo del hospital

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 12/02/2026

El día 4 de marzo a partir de las 22h30, hora española peninsular 💯📣 👉 Hay que registrarse para poder asistir! Muchas gracias a @togetherwemask.bsky.social y @msjulieslam.bsky.social por la organización 🫶

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MaskTogetherAmerica @togetherwemask.bsky.social · 12/02/2026

LCDefense III: 4:35pm Delphine Crespo @longcovidaragon.bsky.social 5:10pm Dr. Ciara Steele @cleanairie.bsky.social 5:45pm Pamela Morrison @lcaireland.bsky.social 6:20pm Elisa Perego PhD @elisaperego78.bsky.social 6:55pm Angela L. @lcawarenessint.bsky.social 7:35pm Devin Russell Long COVID Foundation

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MaskTogetherAmerica @togetherwemask.bsky.social · 12/02/2026

Join Long COVID Defense Series III to honor patients and their allies who are tirelessly advocating for health justice in this historic struggle. On March 4, 2026, 5:00pm-9:00pm EST, 6 Q&A sessions will feature an extraordinary panel of speakers. masktogetheramerica.org/blog/long-co...

An invitation for everyone to register for Long COVID Defense Series III on March 4, 2026, 4:30pm - 9:00pm EST. 6 Q&A sessions will feature an extraordinary panel of speakers, with their masked portraits showing inside frames that say “Support Long Haulers and Mask Together America”.
Schedule:
4:35 pm Delphine Crespo, President of Association of Long COVID Aragón
5:10 pm Dr. Ciara Steele, co-founder of Clean Air Advocacy Ireland (CAAI)
5:45 pm Pamela Morrison, Long COVID Advocacy Ireland
6:20 pm Elisa Perego PhD, a researcher who coined the term Long COVID
6:55 pm Angela L., Creator of International Long COVID Awareness Day
7:35 pm Devin Russell, Founder of Long COVID Foundation
Register to join: https://bit.ly/LCDefenseForum_Mar4

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 11/02/2026

🗞️ En este artículo, puedes leer la entrevista a una de las copresidentas de nuestra federación, #LongCOVIDRiseUp 🗣️"Nos han hecho invisibles: la llamada de atención de la nueva Federación #LongCOVID". 🧵Extractos traducidos del francés al inglés en el hilo siguiente 👇

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 08/02/2026

🗞️ En este artículo, una entrevista a una de las co-presidentas de nuestra federación. "Los pacientes de #COVIDPersistente se unen en una asociación internacional: “En vez de evolucionar, se nos invisibiliza”. #StopTheDiseaseProcess #BlockTheSpead Artículo completo en el post siguiente 👉

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Long COVID Rise Up @longcovidriseup.bsky.social · 07/02/2026

👉 More coverage about the launch of our federation, this time in the French media. 🎙️ On Monday, February 9, the president of @winslowsp.bsky.social and co-president of Long COVID Rise Up, will speak on Radio Maritima at 12h00. Don't miss it! ✨ #StopTheDiseaseProcess #BlockTheSpread

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Dr Elisa Perego @elisaperego78.bsky.social · 04/02/2026

New alliance of organisations for #LongCovid @longcovidriseup.bsky.social

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Long COVID Rise Up @longcovidriseup.bsky.social · 04/02/2026

🚨 BREAKING ✨ Long COVID Rise Up is born! 🔥 Four European organizations fighting #LongCOVID & COVID have joined forces to launch an international alliance. 🗣️ Patients demand action. 🎯 Stop the disease process. Block the spread.

ALT : 4 logos, from left to right, top to bottom : Winslow Santé Publique, Asociacion Long COVID Aragon, Association COVID long Solidarité, et COVID-19 Persistent Catalunya

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 04/01/2026

Feliz año nuevo, Happy New Year✨ Entramos en el 6o año desde el inicio de la pandemia, para muchos, casi 6 años enferm@s Ojalá 2026 sea el año que vea el avance de la ciencia, los tratamientos y los derechos para los pacientes con #CovidPersistente #LongCovid @sanidad.gob.es @isciiisalud.bsky.social

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 21/12/2025

📽️ Os dejamos la grabación de la jornada sociolaboral de #COVIDPersistente del día 17 de noviembre en el Congreso de los Diputados‼️ 📌con @sanidad.gob.es @msocialgob.bsky.social @trabajogob.bsky.social @longcovidaragon.bsky.social 📌 mesas de pacientes, prevención y sindicatos youtu.be/vBmDRYyuAtY

youtu.be

Jornada Sociolaboral COVID Persistente Congreso de los Diputados 2025

YouTube video by LongCovid Aragón

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Winslow Santé Publique @winslowsp.bsky.social · 20/12/2025

vulnérabilité particulière, génétique ou autre (bien que cela puisse jouer, comme pour toutes les maladies). Poke aux camarades CL espagnol-es @longcovidaragon.bsky.social et @covid19persist1.bsky.social

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Winslow Santé Publique @winslowsp.bsky.social · 28/11/2025

Des partenaires COVID long d'Espagne ont signé également ✊, @longcovidaragon.bsky.social @covid19persist1.bsky.social et bien d'autres! ensemble des signataires ici : winslow.fr/signataires-...

winslow.fr

Signataires tribune le monde - Winslow Santé Publique

La liste des signataires de la tribune dans le monde

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Winslow Santé Publique @winslowsp.bsky.social · 28/11/2025

⭕ A lire, TRIBUNE dans @lemonde.fr , en kiosque mercredi ! "les symptômes du #CovidLong ne prennent sens que lorsqu’ils sont reliés à leur cause" Réponse collective à la tribune du Pr Lemogne & al du 04/11 appelant à développer une "science des symptômes" www.lemonde.fr/idees/articl...

lemonde.fr

« Les symptômes du Covid long ne prennent sens que lorsqu’ils sont reliés à leur cause »

TRIBUNE. Cinq ans après l’épidémie de Covid-19, un débat oppose patients, chercheurs et médecins sur la nature du Covid long. Alors que certains travaux lui dénient le statut de maladie, un collectif ...

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Asociación Long COVID Aragón @longcovidaragon.bsky.social · 15/11/2025

🗓 Este lunes 17 de noviembre de 2025, de 15h a 19h30, tendrá lugar en: 📍la sala Clara Campoamor, del Congreso de los Diputados, una Jornada Sociolaboral de asociaciones de pacientes con #COVIDPersistente con @covid19persist1.bsky.social, @covidmadrid.bsky.social y @rcofinof.bsky.social entre otros.

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The Skylark @theskylark.bsky.social · 29/10/2025

🧵

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MaskTogetherAmerica @togetherwemask.bsky.social · 27/10/2025

Our global collaboration w/ @winslowsp.bsky.social @lcawarenessint.bsky.social @thewhn.bsky.social @elisaperego78.bsky.social @covid19persist1.bsky.social @longcovidaragon.bsky.social in creating Long COVID Declaration is our joint effort to make #LongCOVID visible & fight for patient communities.

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