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postx.bsky.social
PostX
@postx.bsky.social
600 followers 390 following 150 posts
Co-Founder Unitetofight2024, Pharmacist, Long Hauler since 2020
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postx.bsky.social
Thank you to the organizers for the fantastic event @virusesimmunity.bsky.social @ahandvanish.bsky.social @daltmann.bsky.social Avindra Nath
Diana Schneider, a patient-advocate based in Germany who received one of the livestream passes, expressed gratitude to Stone and the Long COVID Campaign and admiration for the conference: "Well-chosen topics, state-of-the-art insights, timely info, and a sharp, engaged Q&A." Patient access to events like this one is important because many people with Long COVID dedicate their (often limited) time and energy to reading, discussing, and participating in research, she said in an email. "Access to events like the Keystone Symposium signals inclusion — and acknowledges the daily work and expertise patients bring to the table," Schneider wrote.
August 20, 2025 at 6:55 AM
postx.bsky.social
Haben Sie den Wunsch nach Sterbehilfe auch schon von anderen Patienten gehört?
Weber: Ich bin jetzt seit 1987 im Arztberuf & das habe ich noch nie erlebt. Das ist ein Extremfall… das ist mir noch nie bei anderen Patienten in meiner Praxis oder bei meiner Arbeit im 🏥 begegnet.
Frage nach Erfahrung Sterbehilfe bei anderen Patienten/Erkrankungen Sozialrechtlichen Probleme bei Long COVID Sehr schweres Post COVID- Alltag
August 18, 2025 at 10:48 AM
postx.bsky.social
Wie genau soll denn die (somato)psychische Versorgung Schwerstbetroffener aussehen? Wer von den Autoren hat schon mal eine Person mit verysevere ME gesehen? Hier oft Bilanz-Suizid aufgrund Erkrankungsschwere nicht sek. Depression! Cave stigmatisierende Aussage u. unbelegte komorbide FND Prävalenzen.
Auszug aus Pflegeanleitung ME/CFS (Wien, Hoffmann) S13. Kommunikation
August 9, 2025 at 8:47 PM
postx.bsky.social
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July 23, 2025 at 8:29 AM
postx.bsky.social
Full text
Google translate (1/2)
Screen shot text in English
July 23, 2025 at 8:29 AM
postx.bsky.social
Live blog: International demonstrations ignite for Long COVID Awareness Day

#5YearsLongCovid #HalfADecadeOfNeglect
#LongCovidAwarenessDay2025
#SaltingtheVibes

thesicktimes.org/2025/03/15/i...
Berlin Mauerpark, Long COVID and ME Advocacy group Berlin Buyers held a demonstration. People wear masks and are holding signs in their hands
March 16, 2025 at 10:23 AM
postx.bsky.social
Documentary “Hirschhausen & the Long Shadow of the Pandemic” now on YouTube with English subtitles. Footage from the #UniteToFight2024 conference @unitetofight.bsky.social @virusesimmunity.bsky.social & International ME/CFS Day @scheibenbogen.bsky.social

t.co/XvNHvrnsPp
December 29, 2024 at 7:48 PM
postx.bsky.social
#LemonchallengeMECFS
December 14, 2024 at 3:03 PM
postx.bsky.social
#LemonChallengeMECFS der ME/CFS Research Foundation, inspiriert von der ALS 🧊 Bucket Challenge. Beiß in eine 🍋- als Zeichen für den Schock, den ME/CFS für Betroffene bedeutet.

Awareness & Spenden für die biomedizinische Forschung!
lemonchallengemecfs.org

Ich nominiere @molbaas.bsky.social
December 9, 2024 at 11:25 AM
postx.bsky.social
I submitted the H.E.L.P. Apheresis as a potential intervention for LC to the RECOVER-TLC. In Germany we have access to it but also no trials happening. I talked about how the Apheresis helps me in the latest Hirschhausen documentary (with english subtitles available soon).
November 18, 2024 at 9:15 PM
postx.bsky.social
TV Premiere heute Abend „Hirschhausen und der lange Schatten von Corona“
Ich erzähle dort meine Geschichte. Schalt ein!

www.daserste.de/information/...
November 18, 2024 at 4:02 PM
postx.bsky.social
New Hirschhausen documentary is coming: November 18, 2024, at 8:15 PM on ARD.

I was able to contribute my part.

It focuses on the lasting damage the pandemic has caused – on multiple levels.

A heartfelt thanks to Dr. Hirschhausen, Kristin Siebert & team, Dr. Gunnar Bücker

m.dwdl.de/a/99940
October 17, 2024 at 5:03 PM