Yesterday, I stepped down as CEO of my company. Not because I wanted to, but because in mid-January, I became bedbound with Stage 4 ME. For the past three months, I've watched my team run the company I built while I just lay here, unable to live the high-impact life I was used to. At first, I vowed to get better so I could return to even part-time work. But as I gradually and inconsistently improved over months, I became radicalized for a different cause: Not a single person deserves to live like this. But yet we do, and and no one will save us but ourselves. So today, I begin a new role: I will dedicate the next year of my life - 18 waking hours a day - entirely to this community. I suppose it's time I introduce myself (I've also attached a photo of me, in bed, feeling much worse than I look): - Out of college, I co-founded a magazine that took me around the world doing sports journalism and broadcasting. - Over the past 7 years, I have assembled the greatest team to build and run a sports tech company from the ground up - In the early days of the pandemic, I co-founded and led @getusppe, a team of hundreds, to deliver 17 million+ pieces of PPE to healthcare workers. - I specialize in acting with urgency, seeing gaps, and connecting people to fill them. And most of all, in uniting and building community. I have accomplished a ton in my 35 years on earth before I got sick, but Long COVID and ME are, by an order of magnitude, the biggest challenges I have faced. But when there are so many gaps, there's simply no time to complain. We must roll our compression-wear up and get to work. So here is what I have planned: - Guides and essays: - The Severe PEM Crash Survival Guide - What's the Deal With Brain Retraining? - So You Have Long COVID, Now What? - ...and so many more! - Treatment Experience Surveys to fill the gap between random Reddit anecdotes and slow clinical trials (GLP-1 data released in two weeks) - The first comprehensive AI analysis of all publicly posted recovery stories to look for trends and correlations - Helping a fellow patient and test expert publish the first interactive and comprehensive testing guide for ME - Helping a fellow patient increase the visibility of Stage 4/5 patients as the faces of ME - Creating a network of the highest agency patients working on these conditions to mutually share information, support, and unblock each other - Creating Long COVID and ME microgrants to fund people to work on small but impactful projects - Incubating and raising funding for founders who want to start non-profits and companies (let five more Amaticas flourish!) - Overall, pouring my heart out to support every single person who is interested in working for the betterment of this community (especially where others are far better than me, like science and advocacy!) No one is going to do this work for us. Not doctors, researchers, or government. This must be patient-led. Want to join the movement? Send me a DM, and let's figure out what we can do together. Time to get to work.