DetectEBV: a movement to advance knowledge of the Epstein-Barr virus

First of all, could you introduce yourself? 

I am Céline Perat and I coordinate the DetectEBV movement which aims to show the reality of the Epstein-Barr virus (EBV) and its impact on health. I discovered this virus through contact with various healthcare professionals who started to share their observations on the role this virus plays in autoimmune diseases, cancers, chronic fatigue syndrome, and neurodegenerative pathologies. I really wondered why this widespread virus was so unknown.   

Could you describe the Detect EBV movement? How was this association born?  

DetectEBV emerged quite unexpectedly, to be honest. During the period of lockdown linked to the Covid pandemic, I wanted to know more about this virus and my curiosity pushed me to further investigate this area. To my surprise, the Epstein-Barr virus is the subject of active research in no less than 5000 studies!  

So I started by contacting researchers to ask them to explain to me what Epstein-Barr really is, "everyone's virus" as its co-discoverers Yvonne Barr and Anthony Epstein nicknamed it in the 1960s. This is how I came into contact with researchers from all over the world to better understand the mode of action of this persistent reactivatable virus and also its role in a number of diseases, other than infectious mononucleosis.   

In addition, I also read through numerous patient forums and Facebook groups to gain an understanding of the experiences of people affected by this virus.   

From there, I organized online meetings with patients, caregivers and researchers. The idea of DetectEBV was born based on these three pillars.  

What is the mission of Detect EBV? 

DetectEBV's mission is to show the reality of the Epstein-Barr virus and its impact on the health of many people through 3 pillars: those who study it (researchers), those who track it (healthcare professionals) and those who live with it (patients). Through these three pillars, we find the ambition of the movement which is "to understand, detect and live with the Epstein-Barr virus".   

What are the concrete actions implemented by the Detect EBV community? 

Today, our main goal is to inform. We have created a website in collaboration with patients, healthcare professionals and researchers to help people understand what a persistent reactivatable virus is, in order to raise awareness. For us, taking action already means informing and triggering a 'click' on the importance of monitoring this type of virus that stays with us throughout our lives. In the same way that dormant volcanoes are monitored, the same applies to latent viruses: monitoring their activity should make it possible to better anticipate or minimise their reactivation. Indeed, informed patients are more aware of the symptoms and triggers of EBV reactivation and can adapt their lifestyle to avoid circumstances that favour the "awakening" of the virus.   

On social networks, we also publish interviews with patients, healthcare professionals and researchers, always with the aim of showing that talking about EBV is important to bring this virus out of anonymity. But let's be clear, the aim is not to spread fear about this virus but, on the contrary, to change our vision of persistent viruses that are an integral part of our ecosystem: to paraphrase one of the doctors, "when a virus like EBV has the opportunity to reactivate itself, it is because the person's immune function is deficient". For healthcare professionals, reactivation acts as a "warning", and it is by restoring the full potential of the immune response that the virus can once again come under control.  

What kind of contributors do you work with? 

The three pillars of the movement are fundamental: patients, healthcare professionals and researchers are best suited to talk about this virus. In addition, we are also going to set up partnerships with training institutes for health professionals and with patient associations. Indeed, it is essential that healthcare professionals acquire the reflex to think about EBV when faced with a patient who presents symptoms such as great fatigue, persistent infections, joint pain, digestive problems, etc. Indeed, EBV can manifest itself in a thousand ways, hence the importance of detection by a blood test because oftentimes, outward physical indicators are not enough. 

What are the future projects of the Detect EBV collective? 

We observe that late diagnosis is unfortunately a common point of most EBV patients. Some people go weeks, months or even years without a proper diagnosis. Patients contact us because they need to be put in touch with professionals who know about EBV. For the moment, we act as an intermediary between these patients and healthcare professionals with expertise in persistent viruses like EBV. In the long term, we want to set up a platform to facilitate this connection.    

In addition, we want to continue our awareness-raising activities through online conferences and live chats with researchers, patients and professionals.    

Recent news shows that EBV plays a role in diseases such as long Covid and certain cancers, so we must continue to raise awareness.  

What are the latest developments related to the Epstein-Barr virus? 

Current research on EBV has led to important discoveries about this still relatively unknown virus.  

Most recently, a study has shown that EBV can promote the onset of cancerous processes by causing DNA instability. Another large-scale prospective study from 2022 revealed that EBV is a condition linked to the onset of multiple sclerosis. Researchers are also working to understand the role of EBV in the development of stomach cancer.   

Finally, recent studies have also identified links between EBV and Covid-19, including cases of long Covid in which reactivation of Epstein-Barr virus was observed in more than two-thirds of cases. EBV is a complex virus, one of the oldest in existence and has not yet revealed all its secrets.   

What advice would you give to Carenity members whose conditions are associated with the development of the Epstein-Barr virus?  

With the Epstein-Barr virus, it is a life-long story! Once it enters the body, it stays there, alternating between latent ("sleeping") and lytic ("reactivating") phases. It is important to learn to listen to the symptoms that indicate reactivation and to manage the triggers that encourage it. For example, it is known that multiple sclerosis relapses can be longer and more intense during periods of EBV reactivation. When in doubt, it is essential to talk to your doctor, who can prescribe a serology test (blood test), which can give you valuable information: virus in reactivation phase, infectious mononucleosis in progress, old infection, or no trace of the virus. Still too few healthcare professionals have the habit of monitoring for EBV, so it is sometimes worthwhile to insist on it. The DetectEBV website also provides information for caregivers, it is a very resourceful tool for them too.  

Where can you find the Detect EBV participatory movement on the Internet? How can I join? 

Visit www.detectebv.org as well as Facebook and Instagram. DetectEBV is a community, so there are no membership fees. However, all initiatives are welcome. If you want to get involved or submit a question or idea, you are welcome! Almost everyone is affected because EBV is present in 95% of the population. 

Many thanks to Céline Perat for her testimonial!

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