In my past life, I was a professional athlete, a CEO, and many other things. That all changed after a COVID infection, which triggered severe ME, or myalgic encephalomyelitis. I am currently bedbound and extremely limited physically.
Due to my health, I have had to step down from running TopScore. I now devote all of my available energy to serving the Long COVID and ME communities.
Here is my full dossier, with all of my open source health information, including theories, lab tests, and treatments.
Completed projects:
- What It Feels Like To Have Long COVID
- The Severe PEM Crash Survival Guide
- How to get more Paxlovid - how to get more than a 30-day course of Paxlovid… with a little help from your friends (or family!)
Ongoing projects:
- Highly Agentic LC/ME - a collaborative collective of high-agency patients, including tech executives, researchers, and scientists, working on different projects to advance the community
- LC/ME Data - an organization I started that does collection and analyses of Long COVID and ME data
- United Nations of Long COVID and ME - a collection of resources in every country linking patients to group chats, doctors listings, and local associations, and fostering the creation of such communities where none currently exist
Upcoming projects:
- A Guide to the Canadian Healthcare System for people with Long COVID and ME - how to get diagnosed, find informed doctors, access treatments, and navigate disability as a Canadian patient
- Open Problems, a comprehensive list of unsolved problems in Long COVID and ME, where people can sign up to provide solutions and be mentored by an expert team
- A benzodiazepine Treatment Experience Survey for LC/ME Data
- So you have ME, now what? - a guide for new patients
- ME/CFS Testing Guide - the first high-quality, succint testing guide for motivated patients
- When will ME be cured? - the first public, adjustable forecast of when a clinical trial will show a cure for ME