Support for new researchers in the ME/CFS space can be hard to find. These grants are one of the few built to bring scientists into the field. Ramsay applications are open from @PlzSolveCFS for PhD, postdoc/faculty + collaborative awards.
solvecfs.org/research/ramsay…

When I decided to leave my academic postdoc, I was nervous. If I stayed in the complex chronic illness space (EDS, POTS, ME/CFS), would my next team understand what it's like to live with these conditions? How much hope patients place in research, and how vulnerable that leaves them? At @ChronicleBioAI I didn't have to wonder. Our founders get it, and that's what I'm most proud of about being here. I'm grateful to be doing this with people who want answers as badly as our community does.

Proud to share that our work at ChronicleBio was featured in Forbes! This mission is personal for our founders, and for me too. “I don't think any three people want to solve this problem more than we do. We want it so bad, for ourselves and for our kids, because there is a genetic predisposition to this, and because there are millions of people out there." - @rishi_n_reddy @rohit0logy @fidjissimo

How we communicate the work matters, and especially in conditions that are dismissed and poorly understood.

I've spent years being open about being a patient in the same disease space I research. Being a patient-scientist with hEDS got a lot of attention, sometimes framed as if I was the only one doing it. As my work has expanded into ME/CFS, one of the things I've loved most is that patient-led research isn't unusual there. It's everywhere. Patients designing studies, running advocacy organizations, pushing back on flawed trials, building research programs from scratch. But it has me wondering...are patients stepping up because we want to, or because we have to? ME/CFS has been neglected for decades, underfunded relative to its burden, dismissed clinically, and continues to be incredibly misunderstood. If patients hadn't stepped up, it's not clear who would have. Much of this work is being done by people with limited energy, often unpaid and from their beds. I believe deeply in the sentiment of “nothing about us without us." Patients bring expertise that no one else has and it's a scientific asset to any research approach. But patient-led research can be both a strength and a sign of systemic failure. Patient leadership should be how research is designed from the start, not the backup plan when no one else shows up to move the field forward. I'm curious, does your involvement in research feel like choice, necessity, or both?

The harder a disease is to see, the easier it is to doubt. ME/CFS, long COVID, hEDS, and MCAS don't have a single definitive test. So patients hear "everything looks normal" while feeling anything but normal. I've been there more times than I can count.