Online Communities and Forums
1 Discussion Forums
- Phoenix Rising: https://phoenixrising.me/ and https://forums.phoenixrising.me/
Founded by Cort Johnson. One of the most visited ME/CFS websites. Approximately 19,000 member accounts with 600 daily active members (2017). Covers dysautonomia, hormones, methylation, lifestyle management, relationships, and caregiver support.
- Science for ME (S4ME): https://www.s4me.info/
Independent, patient-led, international forum. Founded by Andy Devereux-Cooke. Each thread typically dedicated to a single research paper, enabling in-depth discussion. Notable members have included Jonathan Edwards, Tom Kindlon, Simon McGrath, and David Tuller. Advocates for patients as research partners.
- Health Rising Forums: https://www.healthrising.org/forums/
Companion to Health Rising blog. Discussion of ME/CFS, fibromyalgia, chronic pain, IBS, and dysautonomia.
- MEpedia: https://me-pedia.org/
Crowd-sourced encyclopedia of ME/CFS science and history. Creative Commons licensed. Categories include notable patients, citizen scientists, and ME/CFS history. Valuable reference for terminology, research summaries, and advocacy history.
2 Reddit Communities
Primary ME/CFS subreddit. Research discussions, treatment experiences, and personal support. Active moderation maintaining distinction between ME/CFS and chronic fatigue symptom.
- r/covidlonghaulers: Related community for Long COVID with significant ME/CFS overlap.
3 Facebook Groups
Major ME/CFS Facebook groups (search on Facebook):
| Group Name | Description |
|---|---|
| Chronic Fatigue Syndrome | Myalgic Encephalomyelitis ME Self Help Group (founded 2012) |
| #MEAction state/regional chapters | Local advocacy groups across the US |
| Pregnancy and Parenting with ME/CFS | Support for parents and expecting parents with ME/CFS |
| Caregiver Support groups | Support for family members and caregivers |
| Severe ME support groups | Dedicated support for severely affected patients |
| Youth ME/CFS support (ages 13–21) | Peer support for young patients |
4 Other Platforms
- Smart Patients ME/CFS Community: https://www.smartpatients.com/communities/me-cfs
Peer-to-peer support where patients and families share experiences and research.
- NURA: Social network platform specifically for Long COVID, ME/CFS, and fibromyalgia patients, created by people with these conditions.