Patient-Led Research Collaborative

patientled.bsky.social

16 October 2026 19:00

New 4YouAndME & PLRC paper in @jmirpub.bsky.social: a co-design framework for 5 patient-built health apps for complex diseases, including #LongCovid. Open code. Free for other teams to build on. 🧵

Billy Hanlon

bhanlon15.bsky.social

16 October 2026 17:37

People: 'Olympic Sprinter, 32, Now Bed-Bound for 22 Hours a Day After Being Diagnosed with ME: ‘Feels Like Your Body’s Shutting Down’' 'Sprinter Beth Dobbin represented Great Britain at the Tokyo Olympics in 2021 before her ME diagnosis' people.com/olympic-spri...

Chloé de Canson

chloedecanson.bsky.social

16 October 2026 05:39

Thank you so much for highlighting the paper :))

Amyville Hoyrror

amyhoy.bsky.social

16 October 2026 05:38

this is A. absolutely 100% true but also B. true of many other disorders. ME is not unique in this way.

Richelle Sepulveda

richellesepulveda.bsky.social

16 October 2026 05:38

All of the most effective treatments I have utilized have come from either patient networks, or from developing something from reviewing research and theories from a mixture of patients and doctors (Like my NREM2 interruption experiment, n=1). Excellent work Chloe!