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

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Dear participant,
We are excited to announce that we are now uploading the complete series of UniteToFight2024 conference videos to our YouTube channel! Relive the insightful sessions and catch any moments you might have missed, all at your convenience.

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We look forward to staying connected and continuing our journey together. Thank you for your support, participation, and for being an integral part of our community!

– The UniteToFight2024 Team
 
(Australian) Senator Jordon Steele-John: Opening Speech YouTube | Transcript

also unreservedly acknowledge the reality that as a member of a parliamentary system that hosts a government that runs a health system, there’s an ownership that I and every other member of Parliament has to take over the continual failures of the healthcare system to support those with myalgic encephalomyelitis and Long Covid.
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These conditions have been experienced by so many for so long. And in response to these lived experiences, so many have been made to feel dismissed, have been discriminated against and are still gaslit.
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There is so much more to correct, and frankly, there are so many failures that still need to be acknowledged, investigated and ultimately atoned for.
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ME Research UK:

On the 15th and 16th of May this year, ME Research UK attended the first Unite To Fight conference – “The biggest community-driven ME/CFS and Long COVID conference ever”, which was held online. During the conference, many areas of ME/CFS and long COVID research were discussed – within which, ME Research UK highlights five key topics:

1. ME/CFS as a part of long COVID.

2. The importance of appropriate involvement of those with lived experience in ME/CFS, and in long COVID research.

3. Research – and lived experience, shows that post-exertional malaise is not a result of deconditioning.

4. Stop saying “long COVID and ME/CFS are a mystery” – more specific research methods are needed.

5. Long COVID research does not appear to be learning from ME/CFS research mistakes.

Read more: https://bit.ly/UniteToFightConf

Access the conference website here: https://bit.ly/46z4X9U

Watch recorded conference sessions here: https://bit.ly/3WBlMfH

https://twitter.com/user/status/1820791935193202865
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Sasha said:
I'm wondering if it might even be a bad idea if it masks a symptoms that's a useful guide to not overdoing it.
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Absolutely, I find ibuprofen for example masks symtoms (esp when i was mild) and leads to crashes if I'm not careful.

But you would assume that they are talking about a drug that will stop/lessen this mechanism of damage that their study seems to identify rather than one that lets it go on whilst making you feel better.

Anyway I'm very interested in this hypothesis and hope they say more about this and start a trial soon.
 
Dr. med. Michael Kacik: Vascular regulation disorder in Post COVID disease & MECFS (Day 2, Block 9)

Discussing dysregulated microcirculation, orthostatic intolerance, nail-fold capillary changes, post-occlusion reactive hyperaemia.

 
SNT Gatchaman said:
For those that missed him live, his talk is now on YouTube

https://www.youtube.com/watch?v=xx8rV2YeIj8
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I agree, Prof Georg Schomerus seems to be an example of a good psychiatrist.

I liked many of his points, one I remember is that medical professionals have been incentivised to make decisions quickly and get people out the door, rather than to exercise curiosity.
 
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Trish said:
Just watched Rob Wust. Very impressive. He has learned more about PEM and the difference between PEM and deconditioning in ME/CFS than the BACME and BPS people have learned on 30+ years. He specifically said the role of physical therapists should only be to help pwME stay below their PEM threshold with symptom and time contingent pacing. He says he also studies people on bed rest for other reasons and they are completely different and don't get PEM.
He has plans for future research.
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I just watched the David Tuller video with Wust and it was very interesting (but might need to do it a few times as I miss bits). My ears pricked up around 34mins in he started mentioning this, and NASA.

I think this pyjama paralysis mandate has become so ingrained (with simplistic storytelling knocking any nuance out) when people say or write 'not based on deconditioning' they hear 'just a little bit' or 'but of course it's not good to decondition, even if it's not the cause' or all sorts of other bargaining with that edict.

And of course we all do it to ourselves, and are thinking what is 'the balance' so is suggestion of finding the PEM threshold is also fascinating.
 
https://padlet.com/katha1970_/perso...with-complex-p20bhx4pb54x1may/wish/2998552241

Summary of the #UniteToFight2024 conference by @katha1970 (on Twi@er/X)

First International Conference on Long Covid and ME/CFS #UniteToFight2024 marks a turning point in efforts to combat this massive global health crisis affecting more than 100 million people

Leading scientists, doctors and patients from around the world joined forces at the #UniteToFight2024 online conference on Long Covid and ME/CFS, which was held on May 15th and 16th, 2024, in searching solutions on how to combat the massive global health crisis associated with these highly debilitating diseases affecting already far more than 100 million people worldwide for both diseases combined, with many more hundreds of millions of new cases expected in the next few years.

With a record number of more than 10.000 registered participants and including the most renowned experts in both fields, this community-driven and solely crowd-funded conference marked a milestone and a turning point, giving hope to countless patients around the world desperately waiting for help.

The conference began with a video message from the German Federal Minister of Health, Prof. Dr. Karl Lauterbach, acknowledging the global health crisis associated with Long Covid, ME/CFS and other post- viral diseases and announcing the allocation of around 150 million EURO to research for these illnesses. The following more than 40 speakers included Prof. Akiko Iwasaki, Prof. Dr. Ron Davis, Dr. David Putrino, Prof. Dr. Carmen Scheibenbogen, Prof. Danny Altmann, and Prof. Dr. Resia Pretorius among many other leading experts and voices. There was a total of more than 20 hours of presentations and live Q&A sessions. The minimal breaks were filled with touching video contributions from patients and patient organizations.

Continues at:
https://padlet.com/katha1970_/perso...with-complex-p20bhx4pb54x1may/wish/2998552241

https://twitter.com/user/status/1901419667345773023
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