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

This conference is happening now. You have to sign up for it. I don't know whether you can still do so while it's happening. I have just started watching 2 hours into the first day, with Carmen Scheibenbogen speaking. Mostly I expect to catch up with talks when they are posted on the website afterwards. I'm not going to attempt to take notes.
 
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.
 
They are now having a half hour lunch break. During the break they have people with LC and ME/CFS from different countries sharing their comments and experiences.
So far the conference is very professionally run, with all talks running strictly to time with a bit of time for questions after each talk. I'm impressed.

Next section will be 3 speakers on the patient persective.
 
If you're still on xitter, it'd be good to share at least 1-2 things about the conference.

It keeps on being demoralizing how few people respond, but it's leaving a record of what was known at the time, how much effort a few renegades were able to push through the indifference of the profession.
 
From an email:

David Tuller's Trial by Error Project Update: "How Long Covid Researcher Are Repeating the ME/CFS Playbook"
That's the title of my talk at the UniteToFight online gathering at 5 PM Thursday in Central European Time--that's 8 AM Thursday morning in San Francisco (where I'll be). The gathering began today--Wednesday. You can still register for it here.

And if you'd like to donate to the May crowdfunder for Trial By Error, you can do so here:

https://crowdfund.berkeley.edu/project/42302
 
I watched some of the PrecisionLife presentation - some genes common i.e. ME/CFS & long COVID. I'm guessing the presentation was substantially the same as the one at the recent NIH Genetics Roadmap webinar?
Pathways/genes related to sleep - are NIH funding trials on sleep medications i.e. in ME/CFS?
 
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