About this project
Making visible what remains unseen.
Because we cannot understand what we never see.
Before anything else, I would like to clarify that I am personally living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
Like many people living with this illness, I alternate between periods when I am able to move this project forward and others when even the smallest effort becomes impossible. If some updates take time or if my responses are delayed, it is never due to a lack of commitment, but because my health condition requires me to respect my limits.
I am neither a doctor, a researcher, nor a healthcare professional. I cannot provide diagnoses or medical advice. My role is different: to gather reliable information, organize it, and make it accessible to as many people as possible.
Why this website exists
When I began searching for information about Myalgic Encephalomyelitis, I quickly realized that the problem was not simply a lack of information.
Researchers exist.
Patient organizations exist.
Personal experiences exist.
Resources exist.
But they are scattered, sometimes difficult to find, and above all, they remain largely unknown to the general public.
I also discovered an even more difficult reality: despite millions of people affected worldwide, this illness remains almost invisible in our society. In many countries, May 12th, the International ME Awareness Day, still passes almost unnoticed, while thousands of lives are changed every year.
Imagine a country with nearly 70 million inhabitants.
A country without borders.
Without a capital.
Without a flag.
A country whose inhabitants gradually disappear from their jobs, their education, their social lives, and sometimes even from their own homes.
This country exists.
It is simply invisible to most people.
This invisibility is what led me to create em-sfc.org.
A mission above all
This website is not only about sharing information.
Its purpose is to make visible what remains unseen.
Providing information is essential.
But understanding is even more important.
That is why this project is not limited to a website.
It is gradually bringing together resources, personal stories, spaces for discussion, musical projects, videos, a future documentary, and other initiatives designed to help people better understand the reality of ME/CFS.
The goal is not only to explain this illness.
It is to help everyone better understand what those living with it experience every day.
Why talk about Myalgic Encephalomyelitis
Words matter.
This is why I primarily use the term Myalgic Encephalomyelitis (ME/CFS).
The term “Chronic Fatigue Syndrome” too often reduces this illness to simple tiredness, while the reality is far more complex.
This misunderstanding has contributed for years to the difficulties faced by many people living with ME/CFS, including within some healthcare systems.
Using the correct name of the illness is already a first step toward greater understanding.
An open project
This project is primarily built for people living with ME/CFS, their families, healthcare professionals, researchers, journalists, and anyone who wants to better understand this illness.
If you know of a useful resource, would like to share information, provide a personal story, or simply make a suggestion, you can contact me through the contact form .
Every contribution helps make this reality a little more visible.
A belief
I will probably not change the world on my own.
But if this website helps one person living with ME/CFS feel a little less alone…
If a loved one finally understands what a family member is experiencing…
If a healthcare professional discovers a reality they were not familiar with…
Or if even one person stops thinking that this is “just fatigue”…
Then this project will have already achieved part of its purpose.
Making visible what remained unseen.