The United Nations of Long COVID / ME 🇺🇳
Too many Long COVID and ME patients 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 no local organizations.
We believe patient communities are essential. They are where grassroots efforts begin for patients to help each other recover and to win recognition from doctors and institutions.
To solve this, we're building a directory of patient communities in every country, mapping official organizations, patient group chats, and local resources.
Where a country has no patient group chat, we'll partner with people there to get one started. Where there's no list of recommended doctors or guide to navigating the local medical system, 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.
We are currently aware of 46 countries with a patient presence:
🇦🇷Argentina
🇦🇺Australia
Group chats
- ME/CFS AustraliaFacebook
- ME/CFS and the DSPFacebook
Regional and smaller groups (1)
🇦🇹Austria
Group chats
- Long Covid AustriaFacebook
🇧🇪Belgium
🇧🇷Brazil
- AVICO Brasilcovid victims and families
- AVICO Brasil on Facebook
Group chats
- WhatsApp groupemail me to join
🇧🇬Bulgaria
- Long COVID Bulgaria (Postkovid Bulgaria)registered nonprofit since 2020
- ME/CFS Bulgariaawareness, patient support, research funding
Group chats
- Postkovid Bulgaria groupFacebook
🇨🇦Canada
- National ME/FM Action Networkmefminfo@mefmaction.com
- Millions Missing Canadamillionsmissingcanada@gmail.com
- Covid Long Haulers Canada
Regional and smaller groups (4)
- Quebec ME Association (AQEM)Quebec
- ME FM Society of British ColumbiaBritish Columbia
- ME Society of EdmontonEdmonton
- ME Victoria AssociationVictoria, BC
🇭🇷Croatia
🇨🇾Cyprus
Group chats
- Long Covid CyprusFacebook
🇨🇿Czech Republic
Group chats
- Long covid a postcovidový syndrom - Česko a SlovenskoFacebook, 4,900 members, very active
- Chronický únavový syndrom (CFS)Facebook, 3,100 members, active
🇩🇰Denmark
🇫🇮Finland
Group chats
- ME/CFS: myalginen enkefalomyeliittiFacebook
- ME/CFS-SuomiFacebook
🇫🇷France
- Association Française du SFCme.asso.sfcf@gmail.com
- AFEMISEAssociation Française de l'Encéphalomyélite Myalgique et les Intolérances Systémiques à l'Effort
- Millions Missing Franceinfo@millionsmissing.fr
- ApresJ20Long COVID
Regional and smaller groups (4)
🇩🇪Germany
- Deutsche Gesellschaft für ME/CFS
- Fatigatio e.V.info@fatigatio.de
- Long Covid Deutschland
- Nicht GenesenLong COVID
- #MillionsMissing Deutschland
Group chats
- Long COVID Deutschland SelbsthilfegruppeFacebook
- me-cfs.net serverDiscord
Regional and smaller groups (2)
- ME Hilfe
- Nicht Genesen Kidschildren
🇬🇷Greece
🇭🇺Hungary
- mecfs.huHungarian ME/CFS patient community site, run by a patient
Group chats
- ME/CFS csoportFacebook, 1,100 members, active
- Post-Covid szindrómaFacebook, 4,100 members, quiet
🇮🇸Iceland
- Iceland ME Associationmefelag@gmail.com
🇮🇳India
Group chats
- Long COVID/ME IndiaWhatsApp
🇮🇩Indonesia
Group chats
- Covid Survivor IndonesiaFacebook
🇮🇪Ireland
🇮🇱Israel
🇮🇹Italy
🇯🇵Japan
🇱🇹Lithuania
- Savarankiškas gyvenimasdisability rights association that also advocates for ME
🇲🇹Malta
- ME, CFS & FM Alliance Maltame.cfs.fmalliance@gmail.com
Group chats
- ME, CFS & FM Alliance MaltaFacebook
🇲🇽Mexico
Group chats
🇳🇱Netherlands
Regional and smaller groups (3)
- Long Covid Netherlands
- PAIS Alliantieumbrella group
- Steungroep ME en Arbeidsongeschiktheidclosing end of 2026
🇳🇿New Zealand
Regional and smaller groups (1)
🇳🇴Norway
🇵🇱Poland
Group chats
- Grupa Wsparcia ME/CFSFacebook
🇵🇹Portugal
Group chats
- Aliança Millions MissingWhatsApp
- EM Movimento WhatsApp grouprequest via info@em-movimento.pt
Each association runs its own WhatsApp group. Contact the association directly to join.
🇷🇴Romania
- Asociatia OpranME nonprofit, also advocates for other unrecognized illnesses
- Asociatia Opran on Facebook
- Asociatia Opran on Instagram
- Encefalomielita Mialgică Româniasmall ME account, Instagram
- Encefalomielita Mialgică România on Facebook
- Long Covid RomaniaX
- Long Covid Romania on Instagram
🇷🇺Russia
- neprosto_ustalostTelegram channel
Group chats
- Russian patient groupTelegram
🇷🇸Serbia
- Association of People with CFS (SHUKS)shuts.udruzenje@gmail.com
🇸🇰Slovakia
- Podporné centrum pre pacientov s CFSpeer support center in Pezinok; hederapezinok@gmail.com
Group chats
- Long covid a postcovidový syndróm - Česko a SlovenskoFacebook, 4,900 members, very active
- ME/CFS SlovenskoFacebook, 1,100 members, quiet
🇸🇮Slovenia
Get in touchBojan Ambrožič, on Instagram or through his contact form
🇿🇦South Africa
🇰🇷South Korea
Group chats
- CFS & Fibromyalgia Patients' AssociationNaver Cafe forum, 4,100 members, since 2014; also covers vaccine injury
🇪🇸Spain
Regional and smaller groups (2)
🇸🇪Sweden
🇨🇭Switzerland
- ME/CFS Verein Schweizmainly German-language
- Schweizerische Gesellschaft für ME & CFS
- Long Covid Switzerland
Group chats
- EM/SFC SuisseFacebook
Regional and smaller groups (2)
- EM/SFC EntraideFrench-speaking Switzerland; meets online or in Lausanne
- Long Covid Kids Switzerlandchildren
🇹🇷Turkey
🇺🇦Ukraine
Group chats
- Post-COVID syndrome support groupFacebook, in Ukrainian, started September 2026
- ME/CFS UkraineFacebook, in Ukrainian, started June 2026
- ME/CFS and Long COVID UkraineTelegram
🇬🇧United Kingdom
- ME Association
- Action for MEquestions@actionforme.org.uk
- ME Action UK
- Long Covid Supportinfo@longcovid.org
- Long Covid SOS
Regional and smaller groups (15)
- WAMESWales
- Hope 4 ME & Fibro NINorthern Ireland; hope4mefibro@outlook.com
- M.E. Support Northern Irelandinfo@mesupportni.com
- Long Covid ScotlandScotland
- LocalME52 local support and advocacy groups
- ME Local Network (MELN)network of local support groups; melocalnetwork@gmail.com
- Sheffield ME and Fibromyalgia GroupSheffield
- 25% M.E. Groupsevere ME
- Long Covid Kidschildren
- Doctors with MEdoctors who have ME
- Supporting Healthcare Heroes UKhealthcare workers with Long COVID
- Forward MEumbrella group
- MECFS Alliance
- Long Covid Advocacy
- Long Covid Patient Action Group
🇺🇸United States
- AMMES (American ME and CFS Society)
- MEAction USA
- Solve ME
- COVID-19 Longhauler Advocacy ProjectLong COVID
- Long COVID AllianceLong COVID
Group chats
- ME/CFS San DiegoFacebook
- Covid Survivors from TexasFacebook
Regional and smaller groups (7)
🇺🇾Uruguay
- COVID-19 Persistente UruguayX community
Discord servers (worldwide)
English-language unless noted. Invite links expire; the ones here worked on October 2026.
Long COVID
ME and chronic illness
Severe and very severe
International organizations
- World ME Alliance
- European ME Allianceinfo@euro-me.org
- European ME Coalitioneuropeanmecoalition@outlook.com
- Long Covid Europe
- MEActioninfo@meaction.net
- Open Medicine Foundation
- IACFS/ME
- LC-PLANrun by Solve ME
- Long Covid Physio
- Physios for ME
- Long Covid Rise Up
- Not Recovered
- React19
- Chronic Collaboration
Countries where we want to start a group chat
- 🇪🇪Estonia
- 🇱🇻Latvia
- 🇸🇬Singapore
If you know a patient, doctor, or organizer in one of these countries, or anywhere not listed above, please contact me at 
The original tweet
— Liam Rosen (@liamsLCjourney) via X