ME/CFS – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Instant messaging
Global ME/CFS communities — two separate spaces (members & professionals)
Instant messaging
EM/CFS Messaging is a members-only space for people registered on em-sfc.org. It complements the information site with a more lively place where people living with the illness, carers and loved ones from around the world can come together and support one another without language barriers. A separate space is provided for exchanges between professionals.
Access messaging: https://app.em-sfc.org/en/
Aims
- Ease the isolation that often comes with myalgic encephalomyelitis (ME/CFS)
- Encourage mutual support around lived experience, symptoms, daily life and practical steps
- Make conversation possible across languages through automatic translation
- Keep the members space and the scientific & medical space clearly separate
Two distinct spaces
Members community — for people with ME/CFS, carers and relatives. Conversations focus on lived experience, daily difficulties, support and the small things that help you get through. Mini-rooms also let you gather in a smaller group.
Scientific & medical community — for professionals and researchers. Discussion history is kept so conversations can be followed over time.
Why a message may take a few seconds to appear
In the members community, each message is first checked by assisted moderation, to limit harmful drift (insults, harassment, aggressive off-topic content, and so on). The message may then be translated for other participants according to the language they have chosen.
These steps take a short moment. If your message takes a few seconds to appear, that is normal: it is not a fault, but the time needed to keep exchanges safer and accessible to everyone.
Mini-rooms
Mini-rooms (members community) let you create a smaller space — for a specific topic, a small support circle, or a temporary discussion.
- Limited capacity (up to 10 people)
- Useful for going deeper on a theme without crowding the main room
- An inactive mini-room closes automatically after a short while once it is empty
Good practice
- Stay focused on ME/CFS: symptoms, daily life, mutual support, practical steps, research
- Write clearly and kindly: many participants have limited energy
- Respect privacy: do not share other people’s personal data
- Messaging does not replace medical advice, a doctor or a diagnosis
- If a message feels inappropriate, use the Report button
- Choose the language in which you are most comfortable reading exchanges
Respect for others
Mutual support needs a climate of trust. In particular, the following are not allowed: insults, harassment, racism, discrimination, personal attacks, and religious or partisan political debates with no link to the illness.
It is fine, however, to talk about lived experience with institutions, lack of recognition or gaps in ME/CFS care — as long as the exchange stays respectful and related to the illness.
A message may be refused automatically if it breaks these rules. That is not a moral judgement: it is a safeguard for the group. Refusals can be reviewed to improve moderation over time.
Important information
This section describes the technical operation of messaging: confidentiality, moderation, translation and securing of exchanges.
Confidentiality — local processing
EM/CFS Messaging is designed not to rely on third-party cloud services for its core operation (moderation, translation, voice dictation). These processes run on EM/SFC infrastructure, hosted locally on our servers — not with an external provider such as OpenAI, Google or DeepL for everyday use.
Your messages are not sold or used for advertising. They serve only the operation of messaging and community moderation.
Local AI-assisted moderation
In the members community, each message is analysed by local artificial intelligence: Llama 3.2, run via Ollama on our servers. No call to an external moderation API is required for this to work.
Messaging is still in its early stages: the moderation system needs running time to improve (learning from examples and administrator feedback). As a result:
- some harmless messages may be wrongly refused;
- some borderline messages may occasionally pass the filter.
In those cases, use the Report button: it helps correct errors and refine moderation over time.
Instant translation — 20 languages
Messages can be translated on the fly into 20 languages (French, English, German, Spanish, Portuguese, Italian, Dutch, Polish, Russian, Ukrainian, Turkish, Swedish, Danish, Norwegian, Finnish, Chinese, Japanese, Korean, Arabic, Hindi).
Translation uses LibreTranslate, an engine self-hosted on the same infrastructure: texts do not pass through an external commercial translation service for standard operation.
Encryption of exchanges
All communication between your browser and messaging is encrypted in transit via TLS 1.2 or higher (HTTPS connection and secure WebSocket — WSS to app.em-sfc.org).
Messages are then processed and stored on EM/SFC servers for display, translation and moderation — always within our infrastructure.
In summary: moderation (Llama 3.2 / Ollama), translation (LibreTranslate) and voice dictation (Whisper) run locally on EM/SFC infrastructure. No data is sent to external third parties for these services in the standard operation of messaging.
Signing in
Use the same account as on em-sfc.org. If you are already signed in on the site, you can often open messaging in one click thanks to your existing session. Otherwise, sign in with your usual credentials.
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