Community & Contributions

Community

The ME/CFS Community

Living with ME/CFS is isolating in a way that is hard to convey to people who have not experienced it. Research across 47 countries consistently documents social isolation as one of the most reliable features of this illness, and a Swiss study found that 90.5% of patients stopped talking about their condition publicly because of disbelief and negative reactions.^[67] Online communities have become a primary source of genuine connection and validation for many people with ME/CFS.

This space exists for that reason. Whether you are newly diagnosed, years into the illness, caring for someone with ME/CFS, or a clinician trying to understand it better, you are welcome here.

How this forum works

Every post is reviewed before it appears publicly. This protects the community from spam, cure-selling, and content that could cause harm.
Posting is anonymous by default. A name or handle is optional. Your email is never displayed publicly and is only used if you ask for a reply.
No treatment claims presented as cures. Sharing what helped you is welcome; presenting it as a cure for everyone is not.
Assume good faith and remember the energy cost. Replying to a post may take someone their entire day's capacity.

If you are looking for larger established communities alongside this one, the most active English-language spaces are Phoenix Rising (forums.phoenixrising.me, running since 2008) and r/cfs on Reddit, with over 200,000 members.

Community

Community Forum

A space for patients, caregivers, and clinicians to share experiences, ask questions, and support each other. Posts are reviewed before appearing publicly.

Forum guidelines

Be kind - everyone here is dealing with serious illness
Share experiences, not prescriptions - no medical advice
Cite sources when making factual claims
Posts are reviewed before appearing publicly

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Submit a Suggestion or Correction

Found an error, a missing study, or something that should be included? Submit it here. All submissions are reviewed carefully by the guide author.

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Community & Contributions

The ME/CFS Community

Community Forum

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Submit a Suggestion or Correction

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