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17 CME points

Final Press Release

World’s Largest Conference on Long Covid and ME/CFS, #UniteToFight2024, Concludes Successfully

Over 10,000 people from around the world, including researchers, patients, caregivers, journalists, politicians, and health care professionals, convened to address the latest advancements and challenges in Long Covid and ME/CFS treatment, research but also social implications.

[Berlin, May 19, 2024]—#UniteToFight2024, the largest conference dedicated to Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), successfully concluded on May 16th. The event, hosted virtually on May 15th and 16th, was organized by five Long Covid patients and gathered top medical professionals, researchers, and thousands of attendees globally to share insights, latest research findings, and discuss future treatment and management strategies.

The conference featured over 45 speakers, including renowned experts like Dr. David Putrino, Prof. Akiko Iwasaki, and Prof. Daniel Altmann, covering diagnostic techniques, therapeutic approaches, clinical trials, and patient care strategies. Dr. Putrino emphasized, “Post-acute infection syndromes are not mysterious. They are under-researched and under-funded.” Prof. Iwasaki noted, “90% of Long Covid patients start off with a mild infection,” highlighting the deceptive onset. Prof. Altmann warned, “If we don’t act now, Long Covid sufferers will have no hope on the horizon for the next 20 years. As a civilized society, as medics, we can’t let that happen.”

A major focus was placed on post-exertional malaise, a critical yet often misunderstood aspect of Long Covid. The conference gave significant attention to patient perspectives, featuring diverse experiences. Former professional athlete Oonagh Cousins discussed how one can’t manage through exercise, while Abigail Koppes shared insights on navigating academia as a Long Hauler. Pam Bishop, a Long Covid patient and former professor, provided relatable anecdotes from her journey, resonating deeply with attendees.

The “unite to fight” concept was emphasized by speakers like David Putrino’s “why we fight,” Anna Brooks’ “We are all in this together,” and Valentina Puntmann’s “giving up is no option.” Community Keynotes, initiated by calls on Twitter, highlighted unmet needs and practical aspects, providing fresh insights. The conference also showcased international solidarity through video messages from various organizations and individuals.

Interactive sessions allowed for in-depth discussions, with attendees asking questions and sharing experiences. Dr. Michael Stingl from Vienna observed, “Once you have seen ME/CFS, you can’t unsee it,” underscoring the lasting impact on healthcare providers. Caregivers highlighted the intense daily realities faced by those with severe ME/CFS.

The conference resonated deeply, providing information and much-needed hope. Lia, an attendee with ME, expressed, “This conference gave me something very hard to come by when you have ME. Hope.” Bobcat, another participant, stated, “This event has been the most uplifting and valuable thing ever to have happened for all sufferers.” Dr. Binita Kane, participant and lung doctor from the UK praised the organization, “A masterclass in how to organize a conference. Patient-driven, patient-focused, inclusive, galvanising, inspiring, world-class research but more than anything; hope for the community that change is here.”

UniteToFight was inspired by the tragic loss of individuals to Long Covid and ME/CFS. Less severely affected individuals committed to bringing about real change through this community-driven and crowdfunded conference project, aiming to enhance understanding, foster collaboration, and drive forward research and treatment strategies.

Co-Organizer Marco Wetzel concluded with a direct appeal to government officials: “Your participation and resources are crucial in this battle. Join us in this urgent call to action.”

Contact Information

For more information, please contact:

Marco Wetzel
Press Officer UniteToFight
Phone: +49-17683041721
Email: [email protected]
Website: unitetofight2024.world

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