CYNAERA Institute - MECFS Library

CYNAERA was not built for healthcare alone. It was built to correct broken logic across systems that erase the unseen. For me, ME/CFS was never just a reference point or an adjacent condition. It was personal. ME/CFS advocates helped me in my chronic illness recovery across conditions. They taught me the culture of chronic illness advocacy at a time when I was still learning how to move through this world. They even corrected my ableist language with love. That stayed with me.

 

By the time Long COVID entered the national conversation, I understood early that this was not a brand new story. Too much of it had already happened to the ME/CFS community for decades. That is why I kept naming ME/CFS everywhere I went, including in policy spaces and congressional testimony. I was not willing to let people talk about Long COVID disability as if the concept appeared out of nowhere, or as if the people who had already lived this neglect did not exist.

 

ME/CFS showed me both the failure and the brilliance. It showed me what happens when science, medicine, and policy fail a community for decades. It also showed me what patients build anyway. Knowledge. Culture. Survival strategies. Research questions. Language. Standards. Community. That shaped CYNAERA. What I built was not just a response to broken systems.

 

It was a response shaped in part by the people who helped me see more clearly. CYNAERA grew from that recognition into a system built to make the unseen visible through predictive models, diagnostic tools, and structural insight grounded in the realities institutions too often miss. This began, in part, as a commitment to honor what the ME/CFS community gave me and to help make sure the next wave of patients does not have to start from zero.