Event management
Before explaining what this page is meant to be used for, it is important to revisit World Myalgic Encephalomyelitis Awareness Day, which takes place every year on May 12.
This day is essential in principle, but in practice, its impact remains extremely limited. It receives little to no media coverage and does not seem to truly reach political decision-makers, who continue to feel unconcerned.
People who are not directly affected often walk past displays of pairs of shoes, empty beds, or other installations meant to represent the absence of patients, without really understanding the reality they symbolize.
In other words, even on this day — which nevertheless has a cost — the lived reality of patients remains invisible.
A personal observation
These statements reflect only my personal perception. Yet, after nearly 10 years of illness, I had only heard of World Myalgic Encephalomyelitis Awareness Day just 3 years ago.
In my view, the money invested in symbolic actions during this day would likely be far more useful if directed toward scientific research, whose funding is already extremely difficult to obtain.
I am not in the habit of criticizing without proposing solutions.
Breaking out of invisibility
Today, it sometimes takes shock to be seen. Breaking out of invisibility so that, at least once a year, the reality of the disease is confronted head-on.
It is obviously very difficult to organize a demonstration involving patients whose health condition does not allow them to endure such an event. However, a different kind of mobilization remains possible.
- Patients with milder forms of the illness, possibly using wheelchairs
- Caregivers, far too often forgotten
- Stand-ins to represent those who are absent
If, on this World Awareness Day, each country organized even a modest procession, followed by a gathering in a clearly identified location, media coverage would become unavoidable.
Political leaders would no longer be able to ignore the situation, and people not directly affected might begin to understand that an invisible scourge is nonetheless very real.
This text reflects my perspective as a patient, but also as someone who observes that, despite some progress, things are moving at a snail’s pace.
The real purpose of this page
This page is not intended solely to present an observation. Its main goal is to lay the groundwork for what will soon be implemented in order to encourage action, exchange, and visibility around Myalgic Encephalomyelitis (ME/CFS).
From this page, you will soon have access to several community tools, designed to adapt to patients’ capacities and caregivers’ needs.
- A community calendar allowing the organization of events, meetings (in person or online), and the sharing of important information for the community.
- An instant messaging system to facilitate exchanges between members, share advice, and create discussion spaces around ME/CFS.
- A video conferencing system intended for organizing support groups, webinars with specialists, and enabling patients and caregivers to meet virtually, without the burden of travel.
These features will be rolled out gradually, taking into account the realities of the illness and the available resources.