UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024

The conference now has their own webpage: https://unitetofight2024.world/.

The homepage reads "Community-driven. Crowd-funded. The first and biggest community-driven ME/CFS and Long COVID conference"

"OUR VISION

We're building a space that's inclusive and accessible
We envision a world free of Long Covid & ME/CFS stigmatization, where every individual can thrive. Our mission is to create an inclusive, interactive space to address unmet needs and drive societal change. As an international, community-driven platform, we unite passionate voices through digital and tangible means, supported by crowdfunding. Our goal is to debunk myths, foster research, and transform public perception of ME/CFS and Long Covid, making recognition and understanding a collective endeavor."

Registration is open to anyone and free of charge.
 
Core team of five pwLC from Germany.

The conference (15-16/5/24) line up is quite expansive. Along with others, the well-known names currently listed are —

Rob Wüst
David Tuller
Michael Stingl
Carmen Scheibenbogen
David Putrino
Bhupesh Prusty
Amy Proal
Resia Pretorius
Martin Kräter
Akiko Iwasaki
Mark Faghy
Wes Ely
Ron Davis
Todd Davenport
Danny Altmann
 
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„Use her name and explain it, tell the world about it…'"

We haven't shared the origins of the idea of #UniteToFight, which was inspired by the unfortunate loss of @dutchlauren who suffered from ME/CFS.

Out of deep respect for Lauren and her family, we kept it private until now. Recently, after intensive discussions with Lauren’s mother, she has given us her blessing to open up about it with you all.

UniteToFight is Lauren's legacy
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I can see this is ambitious, and they have signed up an impressive range of speakers, but it's far too much packed into two very long days. I hope there will be recordings available afterwards. There's no way I can watch that much in two days.
 
Trish said:
I can see this is ambitious, and they have signed up an impressive range of speakers, but it's far too much packed into two very long days. I hope there will be recordings available afterwards. There's no way I can watch that much in two days.
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Me neither, but I like the idea behind it. I do feel they've just started somewhere and are still finding out what direction to move in. Hopefully this organization grows in a good way, I can see the potential benefits of working together.
 
Posting this here for those who aren't on X. Not sure if this is the right place to post this but I thought I would keep it in one place.

I am extremely honored to be part of this patient-led initiative for a worldwide congress on Long COVID, #UniteToFight2024/
@U2Fight_World
Registration is free. My presentation on post-exertional malaise will be aimed at patients, clinicians, and scientists.
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Some negative responses on twitter to this announcement, some of it is legitimate, but this isn't like psychosomatic ideologues, I think it's better to involve people with significant influence than it is to shoo them away.
We are pleased to announce that Dr. Van Kerkhove, Director of Epidemic & Pandemic Preparedness & Prevention at @WHO, will participate in the world's largest #longcovid and #MECFS conference, #UniteToFight2024.

Dr. Van Kerkhove will deliver a statement during the opening ceremony.
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Trish said:
I can see this is ambitious, and they have signed up an impressive range of speakers, but it's far too much packed into two very long days. I hope there will be recordings available afterwards. There's no way I can watch that much in two days.
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From the FAQ:

"Yes, we will publish all the videos on our website and YouTube after the conference."

https://unitetofight2024.world/faq/
 
Press release 10th May 2024 —

https://unitetofight2024.world/news/press-release-2024-05-10/

Diana Schneider, who leads the thematic direction of the conference program and is responsible for speaker relations, acquisition, and the CME points accreditation process, explains: “With 15 community video contributions, 16 community keynotes and perspectives, and over 35 inspiring and distinguished speakers from New Zealand to Canada, #UniteToFight2024 is a unique experience. It sends a powerful message of empowerment showcasing unity in addressing Long COVID and ME/CFS while advocating for better care, more research, and awareness to end stigmatization.”
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Shortly before the conference, #UniteToFight2024 has nearly 8,000 registrations from around the world, confirming the broad interest and relevance of the topic. The audience consists of patients, caregivers, researchers, clinicians, policymakers, and journalists, reflecting the diverse importance of this event.
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“Worldwide, patients are fighting for adequate medical care and social security. It is important to me that the serious conditions Myalgic Encephalomyelitis, Long COVID, and rare vaccine side effects are appropriately represented in public and medical circles. I am proud to contribute to the conference,” says Claus Ernst, responsible for creative direction and project management for videos related to the conference.
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