" The doctors couldn’t find out what had made me feel so unwell "

Under what circumstances did you discover the Epstein-Barr virus (doctor, internet…)?

I have been ill for 6 years. The doctors couldn’t figure out what had triggered my illness. I’ve had a lot of blood tests over the past 6 years and no one has ever mentioned EBV to me. It was a virologist who told me that all these years, I had a primary infection on my blood tests. I had never paid attention. He didn’t understand what that meant. It was only when I presented my tests to several general practitioners and specialists that the EBV diagnosis was confirmed.

How did you react?

At first I had a hard time getting an EBV diagnosis because most doctors, including a very good haematologist, told me: “There is no such thing as chronic EBV. Fortunately, other doctors told me the opposite. Since then, I’ve been doing a lot of research on my own, because it’s a scandal to me that no one knows about this disease, which causes a lot of sometimes serious symptoms.

What are your symptoms? How are you supported (doctor, family, association…)?

EBV causes chronic fatigue, brain fog and irritable bowel syndrome symptoms in me.

How does the Epstein Barr virus affect your daily life?

Chronically, I have what I call “relapses” where I am extremely tired, and I can’t do anything or work. I have moments when I feel better, but overall because of EBV I can’t have a job or a normal life.

Why do you think it is important to raise awareness about the virus?

It is an extremely dangerous virus! It is present in 95% of the population. When it wakes up, the lucky ones get chronic fatigue, the less lucky ones get cancer !!!!