Healthcare, research funding, accessibility and scientific infrastructures were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. The ME community has already been deeply ignored and underserved for decades. Now, we are at risk of losing everything—our healthcare, our research funding, our access to services and information…. Our community was on a precipice of new research opportunities after decades of waiting, and that is being threatened with cuts to ME research. We cannot let our ship sink. Too many lives are at stake. It’s time to send out our SOS signal.

May 12th is Myalgic Encephalomyelitis Awareness Day. On this day, the millions of people with myalgic encephalomyelitis (#MillionsMissing) gather to demand recognition, research and clinical care for people with ME. This year we are fighting to save the infrastructure that is so critical to our lives—access to healthcare, research funding, open science, and accessibility services and information. #MEAction encourages all people with disabilities to join this fight.