Too many Long COVID and ME patients all around the world have nowhere to turn in their own country: no local group chat, no list of doctors or where to get treatments, and certainly no local organizations.
We believe that patient communities are essential. They are where grassroots efforts begin for patients to help each other recover, as well as pursue recognitions from doctors and institutions.
To solve this, we're building a directory of patient communities in every country, mapping out official organizations, patient group chats, and local resources.
Where a country has no patient group chat, we'll partner with them to get one one started. Where there's no list of recommended doctors or guide to navigating the local medical system to get treatments, we'll help someone write it.
Once a region has enough countries mapped, we'll work with each organizer to create a regional group chat - a place to compare notes and help the region or continent progress. Once enough regions are up, organizers from every country and region come together in one place: the United Nations of Long COVID/ME, a single group chat for organizers around the world.
Compiling and editing of country information is in process and will be published shortly.
Anyone with a connection to a patient, doctor, or organizer in one of these countries, please contact me at
— Liam Rosen (@liamsLCjourney) via X