Under what circumstances did you discover the Epstein Barr virus (doctor, internet…)?
I had a reactivation of the virus following my 2nd Covid injection in December 2021. I contracted mononucleosis 20 years ago. I am now 26 years old.
How did you react?
Very badly, this triggered myalgic encephalomyelitis (ME).
What are your symptoms? How are you supported (doctor, family, association…)?
My symptoms are those of a person with ME in a mild state (immense fatigue, migraines, muscle pains, flu…). I can’t work any more and I spend most of the time at home. I am followed by my general practitioner – an internist in Paris – and I am a member of the association Million Missing France, which fights for people with encephalomyelitis.
How does the Epstein Barr virus affect your daily life?
It has impacted my daily life quite slightly for 20 years (I was more tired than average, with ENT concerns, anxiety as a result…) and now impacts it within all spheres of my life, following its reactivation after the Covid vaccination and the triggering of a chronic and neurological disease.
Why do you think it is important to raise awareness about the virus?
It is essential to be able to offer more appropriate medical follow-up once a person has been infected with the virus to prevent serious and irreversible consequences during his or her lifetime. Or to be able to propose more efficient solutions for a remission, a “dormancy” of the virus and prevent its reactivation.
Would you like to share anything else about your experience?
I feel sad and angry that I did not have a more rigorous follow-up, that I was not able to measure the fragility of my immune system to be able to anticipate the shocks (vaccine, Covid, virus,…) that developed ME in an irreversible way.
Now I hope that research will be able to provide the best possible relief over the next few years for the more than 300,000 people who suffer from this disease in France, the vast majority of whom reactivate the EBV virus.
