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.
UK Long COVID & ME DoctorsThe first-ever directory of UK doctors and clinics that take Long COVID and ME seriously. Private and NHS specialists for POTS, MCAS, dysautonomia and more, each with patient-sourced notes on cost, telemedicine and what each one prescribes.
The very severe are the least seen patients in ME, and the stock photos that illustrate most articles show none of it. We are curating high-quality, representative photos for a gallery on MEpedia, so that journalists, advocates and ME organizations can use them for free in articles and advocacy. Patients and carers can upload a photo here.
Stay in the loop
Get notified when we launch new projects.
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.