EM/CFS Messaging is a members-only space for people registered on em-sfc.org.
It is meant to extend the information site with something more alive and more human: a place where people affected by the illness, carers, and loved ones can talk, support one another, and feel a little less alone. A separate space is also available for professional discussion.
EM/CFS Messaging is for everyone touched by the illness — whether as a patient, carer, loved one, or professional. It complements the information pages with a protected place for real exchange and mutual support in daily life.
Open the messaging app: https://app.em-sfc.org/en/
Aims
- Help reduce the isolation that so often comes with myalgic encephalomyelitis (ME/CFS), recognised by the WHO as a neurological disease
- Encourage practical, compassionate support around symptoms, daily life, and lived experience
- 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 loved ones. It is a place to talk about lived experience, everyday difficulties, emotional support, and the small things that help. Mini-rooms also make it easier to gather in a smaller group.
Scientific & medical community — for professionals and researchers. Discussion history is kept so conversations can be followed over time and ideas do not get lost.
Why a message may take a few seconds to appear
In the members community, each message first goes through assisted moderation to help 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 little time. So if your message appears a few seconds later, that is normal: it does not mean anything is broken, only that the system is taking the time needed to keep exchanges safer and easier for everyone to follow.
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
- Try to stay focused on ME/CFS: symptoms, daily life, mutual support, practical steps, and research
- Write clearly and kindly: many participants have limited energy
- Respect privacy: do not share other people’s personal data
- Messaging is not medical advice and does not replace a doctor or a diagnosis
- If a message feels inappropriate, use the Report button
- Choose the language in which you feel most comfortable reading messages
Respect for others
Mutual support depends on 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 absolutely fine, however, to talk about how institutions respond (or fail to respond), about lack of recognition, or about gaps in ME/CFS care, as long as the exchange stays respectful and connected to the illness.
A message may be refused automatically if it breaks these rules. That is not a moral judgement: it is simply a way to protect the group. Refusals can be reviewed so moderation can improve over time.
Information
Messaging is currently free.
In the future, a modest subscription may be needed to cover operating costs (automatic translation with DeepL, hosting, moderation, and so on). The goal would simply be to keep the service sustainable over time.
If contributions ever exceed the costs actually incurred, any surplus would be donated in full to ME/CFS research, once the invoices have been paid.
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, simply sign in with your usual details.
Not registered yet? Create an account