ME/CFS – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Act, connect, come together
Community calendar, messaging and mobilisation around ME/CFS
Events
This page brings together tools to organise or follow ME/CFS-related events, connect with the community and, where appropriate, prepare mobilisation — especially around World ME Day on 12 May.
Events calendar
Important dates for the community: meet-ups, webinars, awareness actions, online discussions, and more.
Access: anyone can view the calendar. Registered members on em-sfc.org can propose an event they are organising or aware of — for example an in-person gathering, a discussion on a specific topic via messaging, a video support group (coming soon), etc.
Moderation: each proposal is reviewed before publication, usually within 24 to 48 hours. An email exchange may be needed to obtain further information.
Instant messaging
Connect with the members’ community or the professional space, depending on your profile. Useful for announcing an event, preparing a themed discussion or staying in touch between meetings.
Messaging page — access and overview →
Before taking part in exchanges, please read the good practice guidelines for messaging (respect, confidentiality, ME/CFS focus, reporting abuse). The messaging app itself is available at app.em-sfc.org.
World ME Day on 12 May
Every year, 12 May is World ME Day. On this day, associations and people affected engage in many countries to remind others that the illness exists and to support those who are ill, their loved ones and carers.
A personal view
The lines below reflect only their author’s perspective. After many years of illness, I myself only discovered this world day relatively late. That led me to think about other ways of gaining visibility, in addition to initiatives that already exist.
Mobilising differently
12 May is internationally recognised: actions are planned or carried out in many countries. Yet media coverage remains very limited — in much of the world, and especially in France, where ME/CFS is rarely, if ever, mentioned in mainstream media or evening TV news. Despite a dedicated day, the illness largely remains invisible to the general public.
Organising a “classic” street mobilisation is also often impossible for people whose health does not allow it — a central constraint of our illness. Hence the value of other forms of action, accessible from home or usable throughout the year:
- online or hybrid events;
- involvement of carers and loved ones, too often forgotten;
- light presence in public spaces for those who can manage it (including in a wheelchair);
- sharing information via the community calendar and messaging.
The aim is not to replace 12 May, but to complement what already exists — so that ME/CFS is a little less ignored, including when the media do not pick up the story.