"CrunchME is a volunteer project, mapping out the research, clinical, tech, and advocacy ecosystem around ME/CFS, Long Covid, and other infection-associated chronic conditions. Our aim is to help provide an information base to new and existing members, and so accelerate progress towards treatments and cures." https://crunchme.notion.site/CrunchME-bdad59a761ae4ff495fc82686a6ab7b9
Bad web design I think. I got tired of watching some sort of "loading page" icon, and closed the tab before seeing anything. I don't need a super-high definition graphic or a bunch of videos that automatically load, if that's what the page has.
The web design seems to be very simple and accessible, no super-high definition graphic or a bunch of videos that automatically load as far as I can see (in fact I don't see any graphics or videos at all), it's all just links to different things.
Same on Android, but if you click the three dots in the top right corner of the pictures you can download them.
Yep. Keeps on making my browser crash though. Here are two pics I downloaded that seemed rather good. Log scale comparison of NIH disease funding per burden: ME Association funds vs Spending:
Ror Preston on Bluesky: https://bsky.app/profile/rorpreston.bsky.social/post/3lgq4nka26k2b Very excited to say that @crunchme.bsky.social's first report is out and about The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action *now*!
That's quite a long and detailed report mainly focused on research funding. The section on what is already known about ME/CFS biology exaggerates the level of certainty, I think. It's an impressively presented document, and I congratulate the producers on their massive effort. I'm unclear who it's aimed at and expected to achieve.
On May 10, @weandmecfs and the National Reference Center for Post-viral Syndromes are organizing a HYBRID scientific symposium called “Demystifying PEM.“ Please share as widely as possible — if possible especially w/ clinicians & scientists Speakers & more details below https://twitter.com/user/status/1915770795491516815
Speakers include @PutrinoLab @ver_hac @BeateBiesenbach Christian Puta, & Ralf Harun Zwick. More details on the hybrid (online and in-person in Vienna) symposium “Demystifying PEM“: https://twitter.com/user/status/1915770799308390569
