An Epstein Barr virus (EBV) vaccine to prevent lupus? EBV infection may be a common trigger, causing the onset of diseases like lupus. This list includes disorders such as:
The first four are autoimmune diseases, where the affected person’s immune system attacks their own body. The cause of chronic fatigue syndrome is unknown.
Could we possibly prevent these problems if we could prevent EBV infection (or decrease the severity of infection)? In this blog post, I will discuss some evidence for EBV causing these disorders, then mention current work on vaccines against EBV.
At the end of this post, I will list other ways to possibly help prevent lupus that people can do now.
Life cycle of Epstein Barr virus infection: From the initial (primary) infection to persistent infection
What is Epstein-Barr Virus?
Epstein-Barr virus is a type of herpes virus. So, it is related to herpes simplex (the cause of cold sores on the lips) and herpes zoster (the cause of shingles).
EBV is spread through saliva (hence “the kissing disease”) and during sexual intercourse. 95% of adults worldwide (almost all) have been infected with EBV. An infected person can spread the infection to others for six more months (on average) after the initial infection. However, some people are infectious for decades after the initial infection.
EBV most commonly causes mononucleosis (widely called “mono”). Symptoms of mono include malaise (feeling unwell), headaches, fevers, sore throat, rash, swollen lymph glands in the neck, nausea, and vomiting. Mono can also cause liver inflammation (hepatitis), pneumonia, heart muscle inflammation (myocarditis), sores on the genitals, muscle pain and weakness (myositis), kidney inflammation, and pancreas inflammation (pancreatitis). It can also attack the nerves, spinal cord, brain, and blood cells.
One of the most common and debilitating symptoms of mononucleosis is fatigue. Most individuals fully recover after about 1-2 weeks. However, the fatigue can be severe and last for months in many people.
Rare patients can develop a persistent infection called chronic, active EBV infection. These individuals have persistent mono symptoms and ongoing EBV detectable in their blood. The only treatment for this complication is bone marrow transplantation.
EBV can even cause cancer in some people, especially cancer of the white blood cells (called lymphoma). Fortunately, this is rare.
Many different things can trigger autoimmune diseases like lupus to occur. EBV is thought to be one of these triggers.
How Does Epstein-Barr Virus Cause Diseases Like Lupus?
EBV infects primarily white blood cells called B cells (B lymphocytes) and T cells (T lymphocytes), epithelial cells (commonly cover organs, such as skin), and muscle cells (myocytes). In people with genes that can cause autoimmune diseases (like lupus, Sjogren’s disease, rheumatoid arthritis, and multiple sclerosis), lymphocyte and epithelial cell infection can lead to immune system overactivity.
Many people with disorders like lupus, Sjogren’s disease, multiple sclerosis, and chronic fatigue syndrome can pinpoint the onset of their illness right after getting mono.
“Do you have a disease that began right after getting mono?
Did you develop a disease different than in this shortlist?
If you feel comfortable, describe your experience in the comments so others can realize they are not alone.”
Young man with a malar (butterfly) rash of lupus
Lupus: What if there were an EBV vaccine to prevent lupus?
Evidence suggesting EBV as a cause (or trigger) for lupus includes that lupus patients have higher levels of EBV antibodies and amounts of the virus in their blood. Research shows that some children with systemic lupus erythematosus develop it right after having infectious mononucleosis. Also, at the University of Oklahoma Health Sciences Center, lupus experts showed that EBV had infected 99% of their young SLE patients. In comparison, normally, EBV infects only 70% of young people in this age group.
Sjogren’s disease causes dry mouth and dry eyes along with numerous other systemic complication
Sjogren’s Disease
The exocrine glands (like those that produce saliva and tears) are lined by epithelial cells. When EBV infects them, these epithelial cells can interact with the immune system and cause the glands not to produce fluid normally. This may be one of the causes of Sjogren’s disease, which causes dry mouth, dry eyes, and numerous other complications.
There is evidence of multiple sclerosis being caused by EBV
Multiple Sclerosis
EBV more commonly infections children with multiple sclerosis (MS), according to one study. EBV infects 84% of young children with MS, while infecting only 42% of children their age who do not have MS. In January 2022, researchers at Stanford University published data showing how EBV could cause MS.
Fatigue and malaise in chronic fatigue syndrome can be devastating and often occurs after mononucleosis
Chronic Fatigue Syndrome
Note: many experts use myalgic encephalomyelitis instead of chronic fatigue syndrome. I will use the combined term myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short. Experts commonly used this term in the medical literature.
ME/CFS is a debilitating disorder causing life-altering, severe fatigue accompanied by inadequate sleep (waking up feeling unrefreshed), unwell (malaise) after minimal activity, memory problems, and lightheadedness when standing. The Institute of Medicine has developed ME/CFS diagnostic criteria that include these symptoms.
COVID-19 infection is one of the most studied infections in history. There are large numbers of infections occurring in a short time frame. This presents a unique opportunity to study why this viral infection causes ME/CFS symptoms.
Suppose researchers prove that EBV causes ME/CFS. In that case, this could potentially lead to effective treatments and preventative strategies against this devastating problem.
Could an EBV vaccine prevent lupus and related disorders?
Epstein-Barr Virus Vaccine Research
Moderna, the company that produces one of the mRNA vaccines against COVID-19, announced they had made a possible mRNA vaccine directed towards EBV. In December 2021, they announced they’re conducting a phase I clinical trial (research study used to develop FDA-approved drugs) for this vaccine.
Previous EBV vaccine studies using other types of vaccines showed that they could decrease EBV symptoms, but they did not prevent infection. If an mRNA vaccine could help reduce EBV infections, it would be wonderful if we were also to see a reduction in diseases like lupus. I am hopeful.
The excitement of Patient Advocacy Groups
As Chair of the Board of the Sjogren’s Foundation, I attended the 2022 National Health Council (NHC), along with our Chief Executive Officer (CEO). The NHC is a wonderful organization composed of non-profit organizations dedicated to helping patients.
I had the pleasure to meet Oved Amitay, the CEO of “Solve ME,” a patient advocacy group dedicated to helping those suffering from ME/CFS, at the National Health Council meeting in 2022. He told us about Congress pledging close to 100 million US dollars to study those suffering from persistent symptoms after COVID-19 infection. This led to a lively, optimistic conversation about the potential of this research and the potential for preventing disorders like ME/CFS, lupus, MS, and Sjogren’s disease if a vaccine against EBV could lead to a reduction in the onset of these disorders. The CEO of the MS Society was onstage as Oved’s co-panelist, and she shared his enthusiasm.
Below is a list of things that family members of lupus patients can do to lower their risk of getting lupus
Preventing Lupus in Family Members
Close to 150 genes can increase the risk of getting lupus. However, people who have these genes usually need something to trigger the disease to occur. The evidence for this is that most people with these genes do not get lupus. Also, if someone who has an identical twin (therefore has the same genes) develops lupus, their twin does not get lupus most of the time. This is strong evidence of environmental factors (triggers) playing a role.
Since family members (especially children) of people with lupus can have the genes that cause lupus, it makes sense that they could potentially prevent lupus if they avoid these triggers. I recommended this in the 1st edition of “The Lupus Encyclopedia.”
In 2019, I attended the Evelyn V. Hess Award acceptance lecture by lupus expert Dr. Judith James MD of the Oklahoma Medical Research Foundation. I was happy to hear her make similar lupus-prevention recommendations.
In a previous blog post, I listed ways that family members of lupus patients could potentially prevent lupus. I will list these again at the end of this post. People with lupus should consider sharing this list with their family members (especially children).
If you have lupus, make sure to share these recommendations with all your family members (especially children). Read my previous detailed post at this link. These are my recommendations in a nutshell:
List of things to possibly lower the risk of getting lupus
Healthy use of moderate alcohol drinking when old enough. Do not exceed recommended limits. (For example, women should not drink more than 5 oz of wine or 12 ounces of beer daily, men under 65 years old no more than 10 ounces of wine or 24 ounces of beer).
Family members of people with lupus are at increased risk of getting lupus due to genetics.
There are things that they can do and avoid now to decrease this risk, as per the list above.
EBV may be an important trigger for developing lupus and other disorders. Suppose a vaccine can be developed against EBV. In that case, this could reduce the risk of getting lupus and other EBV-induced diseases.
For more in-depth information on Epstein Barr Virus and lupus:
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help.
QUESTIONS (Please answer in the COMMENTS):
Did you develop lupus after having mononucleosis?
Did you develop any other disorder after mono? If so, what?
Suppose a vaccine against EBV is proven to lower the risk of getting lupus and other diseases and is safe. Would you recommend it to your children, grandchildren, and other family members?
References:
Each data point above has a link to the appropriate medical article
I love this blog post! We need to be putting our heads together with researchers who study these other highly fatiguing conditions.
Along with Sjogren’s, I have been told I have reactivated EBV, based on blood tests. I certainly feel “viral”, all the time. I probably had EBV in early childhood because I did not have mono. I was initially diagnosed as having ME/CFS when my Sjogren’s became severe because I had incapacitating fatigue and I was seronegative and my lip biopsy was not yet positive. The similarities of Sjogren’s with ME/CFS, and now Long Covid, are too striking to ignore.
People with ME/CFS, Long Covid, chronic Lyme, and other infection-associated chronic diseases share many features, predisposing factors, and pathways. Autoimmune/autoinflammatory patients, especially those with Sjogren’s and MS, share many features with these other conditions. Sjogren’s fatigue, on average, tends to be more severe than most AIRDs. Of course, there is a spectrum of severity for each condition.
Like many other Sjogren’s patients, I have extreme fatigue, neuropathy, POTS (and other autonomic disorders), brain fog, widespread pain, chronic flu-like fatigue, unrefreshing sleep, nausea, and headaches. These disabling features are often worse in seronegative patients. Many of us are labeled as having fibromyalgia, functional disorders, or anxiety for years before a Sjogren’s diagnosis is finally made. The psychologizing labels and dismissive attitudes are devastating and continue long after diagnosis. This is experience is common for patients with any of the highly fatiguing conditions that don’t have biomarkers (yet) that “prove” how sick we are.
We need to shift how we think about and study these conditions. While each condition carries its “signature” challenges, the central theme of FEELING SICK/ FLU LIKE all the time is remarkably similar. There is much excellent work on Long Covid being done that looks at the complex interplay of genetics, infection, autoimmunity, gut microbiome, vascular changes, mitochondrial, and other metabolic functions. As Dr. Amy Proal of the PolyBio research foundation describes in this video, the common pathway that destroys our quality of life seems to converge on disordered vagus nerve function and sympathetic/ parasympathetic balance. You can skip to about minute 52 to see that part of the video, but the whole video is worth watching. https://www.youtube.com/watch?v=Sn3IoyAP91g
There is also a possibility that the innate immune system of our CNS (microglia) is unable to perform its normal function of balance/ regulation, along with the above factors. We still have a lot to learn! https://www.frontiersin.org/articles/10.3389/fncel.2022.888232/full
Thank you, Dr. Thomas, for looking out for us. We need creative thinkers like you.
I was diagnosed with Mono in 1983. Many issues with health began to arise. The GP at the time sent me to a Rheumatologist who suggested Lupus however no follow-up was done. Each new issue was treated separately not as a possibility of being lupus even when I questioned the doctors. The constant debilitating fatigue was the worst. It wasn’t until 2016 after demanding to look at lupus as a reason for on going interstitial cystitis, fatigue and scleritis that I was sent to another rheumatologist. At the initial appointment she said Lupus was not likely. Once bloodwork was completed she called immediately to say yes, LUPUS was evident. Finally, but the journey does not end there. The rash, fatigue, weird symptoms, sporadic pain and other issues did not subside with taking Immuran. When I asked for help with this I was told to pretty much suck it up. Fatigue and not sleeping well continued. After some research I found a Lupus Clinic in Toronto and my GP referred me. Things are getting better with their help. FINALLY…after almost 40 years…
Yes! I’ve suspected for years the correlation between EBV and lupus. I had mono Senior year in H.S., after kissing my boyfriend, a lot. I was so fatigued for months. But recovered. Fast forward twenty-two years to 2010, when a lung infection triggered undiagnosed onset of Systemic Lupus Erythematosus. At Temple Hospital in Philly, they tested me for everything but scratched their heads. A positive ANA (which they said could just be from the pseudomonas infection), red cheeks, wildly fluctuating blood pressure, feeling like an elephant was on my chest, and burning sensation of upper abdomen. A CT showed an enlarged liver and spleen. Oh and my monocytes were extremely high. They dismissed the latter as just an indication I’d had a past mono. Years later, when I’d first read about EBV, I learned it can lay dormant in the liver and spleen. And mine were enlarged! I’d asked a young doctor at Temple, “Why is my spleen enlarged?” “I don’t know,” he replied, “I don’t specialize in spleens.” So there ‘ya go…
1. YES! In my late 20’s I had what I suspected to be EBV – though at the time (1990’s) EBV was not widely accepted as a condition and my illness was dismissed as “something that existed only in my head”. I contracted a long lasting case on mono in my early thirties. I struggled for over a decade with what I thought were re-current mono- relapses. It was only after I found out an uncle and cousin in the UK also suffer from lupus that I asked my doctor for a lupus test and was referred to USC’s clinic.
2. Yes- lupus.
3. Yes, without reservation! My children have similar temperaments and physiology to mine. Our youngest also participated in the Teen Moderna Covid vaccine trials, and I cannot say enough positive things about the safety and care Moderna took.
Amanda: Thank you for sharing your experience regarding Epstein Barr virus and lupus. I wish we had better across the board better ways to diagnose people faster so they don’t have to suffer like this. And what a wonderful child you have to participate in such important clinical trials. You have to be very proud!
Thank you Dr. Thomas. I credit caring physicians (like yourself), nurses and clinicians who participate in on going education and panels, support research and educate the greater population about RA and lupus. I can’t thank you enough for your pursuit this particular branch of medicine and your commitment to helping so many of us.
I had a severe case of mono (high school 1980’s) with an enlarged spleen, swollen lymph nodes, and very high WBC, to the point where the doctor’s believed it could have been leukemia. I continue to show signs of EBV in my blood tests. Some doctors have commented on this to me, but never indicated it may be one of the reasons for my SLE. I wasn’t diagnosed with SLE until 2020. Thank you for this article, Dr.Thomas. I have yet to get on the proper therapies to control my SLE. I am now waiting to start IVIG therapy and hope that this works for me.
I got very I’ll in 1996 at age 40. It started with headache, low fever, and neck ache. Then I started getting reoccurring vertigo attacks. I ran a fever for 5 months. Of course the doctors thought this was all in my head. I lost my ability to walk. It was almost a year before I found a doctor who diagnosed me with CFS. I was sick for years in recovery/relapse mode, but I was pretty much back to normal by 2003. I was tested for EBV and had antibodies, like most people. I have never been sick from EBV. In 2012 diagnosed with SLE. I also now have primary Immune Deficiency. I believe I did have a viral infection at the beginning but thinking maybe it was HHV-6. Has anyone researched that? One last comment: as bad as lupus is, I would take it over CFS any day.
CK: yes, herpes viruses have also been implicated as possible triggers of lupus. I’ll reference some studies below. There are also theoretical links between EBV, SLE and immunodeficiency as well. I can totally understand how horrible CFS. Just hearing how someone can be completely exhausted for days after normal activity is just hard to imagine.
Yes!! I have always wondered if EBV started it all. I had a very bad case of recurring EBV in the late 1970’s my spleen was inflamed, vomiting, headaches, fatigue, muscle pain I was off school for the majority of the year. I would try to go back to school and be struck down with incredible fatigue and recurring symptoms then go back to the doctor who would do a blood test which came back positive, however he would say it’s impossible you cannot have EBV again you can only get it once.
The fatigue has continued for my entire life. In the mid eighties I developed painful swollen joints in my hands, sensitivity to sunlight (the sun would make me feel drained and sick and I’d look like a beetroot after minimal exposure). Over the next few decades I developed chronic anaemia, random rashes and pigmentation of my skin, I was always in pain everything hurt constantly, this was blamed on various things I’d be told oh you must be depressed and it’s in your head, or let’s put you on the pill and sort out your hormones. It was so frustrating my symptoms were dismissed so much you begin to wonder if you are imagining things and going crazy.
Eight years ago I came across a sign in a chemist listing various symptoms and offering a test for Coeliac I had the majority of the symptoms listed so I took the test and it came back positive.
Three month after starting the gluten free diet, my fatigue became so bad that I struggled to get out of bed and stay awake, I developed a malar rash and the pain and swelling in my joints became so severe I couldn’t use my hands, I literally couldn’t pull my undies up after going to the toilet it was excruciating. I was finally tested for ANA which was off the charts and sent to a rheumatologist who diagnosed SLE I’m now taking Plaquenil and methotrexate my pain is under control but the fatigue still lingers.
I have two children, one was diagnosed with Coeliac not long after I was and she developed SLE a few months later. The other has chronic disabling pain and inflammation in his arm which nobody can work out what the cause is. The only things that have shown up on test are oedema in the bone marrow of his arm and a small bone island.
I also have four grandchildren and one great grandchild I would have no hesitation in encouraging them to have an EBV vaccine if it was available.
Thank you so much for publishing your lupus insights, this has helped me make positive changes in my life and provided me with valuable information to pass onto my PCP when discussing Lupus with him.
I was diagnosed with hypothyroidism when I was 15 years old. As a young adult (many years ago) I started showing symptoms of what I now recognize as Raynaud’s Syndrome. I got sick with Covid Symptoms in the first part of 2020, when we didn’t have easy access to tests. Life was not the same after getting sick that time. I had a lot of fatigue, body/muscle aches, and what I now recognize as being sensitive to the sun. I am 51 years old and Menopause came at the same time as dealing with all this. Actually, I wasn’t sure which condition was making feel so bad.
After several labs and doctor’s visits, I was diagnosed with Lupus last year and I have been on hydroxychloroquine. I asked my doctor to order a test to determine if I have Epstein Barr and results confirmed my suspicion. I have been taking medication for that too.
Thank you Dr. Thomas for all the research and the information you share.
And thank you for sharing your story, Claudia. I sure hope your doctor can help you feel better. I suspect they may have trouble distinguishing whether the fatigue is from lupus or “long haul” COVID symptoms.
Good luck!
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