For years, patients suffering from Long COVID and ME (myalgic encephalomyelitis) have been stuck between a rock and a hard place: waiting for the snail's pace of research and trials, or spending hours poring through social media for anecdotes.
We believe there's another way. Patient-sourced data, analyzed with AI to get the community the information it needs quickly and efficiently.
Projects
Trying treatments for Long COVID and ME is like playing minesweeper: patients are getting better (or worse) from experimental treatments, and no one quite knows why. We aim to solve this by running focused, in-depth surveys on individual treatments and use AI to surface patterns: who benefits, who worsens, what correlates with outcome.
No one has ever attempted to systematically assemble all known public recovery stories from Long COVID and ME and run structured analyses on them - until now. We're collecting every recovery account we can find, extracting structured data with AI, and looking for the patterns that separate those who recovered from those who didn't.
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About
This project is organized by Highly Agentic LC/ME, a group of patients from tech and research backgrounds volunteering their time to give back to the community.