The Relationship Between Epstein Barr, ME/CFS and Long COVID

Why Mononucleosis / Glandular Fever Might Be The Cause of All My Problems

When I was sixteen, I got glandular fever. Some countries call this mononucleosis. Until then, I had been athletic, active, engaged and energetic about life. I was delirious for two weeks with a fever of 104°f (40°c). I was swetting so much that the sheets on my bed had to be changed twice a day. For months afterwards my body felt weak, diminished, deflated. No matter what I tried, I just didn’t seem to be able to recover the stamina and concentration levels I had once had. Not only that, I started to get migraines. Some were so bad that they lasted for days. They always made me violently sick.

As life moved on, I got used to the new normal. I adapted as best as I could to my new energy levels. I rolled with the punches as I found myself catching pretty much everything that was going around. This included numerous bouts of sickness, including bronchitis, swine flu, and shingles. Then, in early 2006 the bronchitis became pneumonia.

I was living in the US at the time and so dragged myself to the out of hours doctor who prescribed Levofloxacin. I did not know this at the time but I am highly allergic to it. It made me very ill indeed and I was rushed to hospital. I narrowly escaped with my life.

But once again, I just didn’t seem to recover from what turned out to be viral pneumonia. I was still sick a couple of months later. My primary care physician did some blood tests and then informed me that I had mono. Not again, surely? It turns out, yes, you can get glandular fever (mono) more than once. The Epstein Barr virus lies dormant in your bloodstream and the trauma my body had been through re-triggered it. So there I was battling pneumonia and mono at the same time.

The lasting effects were even greater than before. It is difficult to tell which symptoms have been caused by the viruses and which by the allergic reaction to the medication, but here is a list of what it is like during a flare up.

  • Stamina – greatly reduced, like a battery that never fully charges overnight and seems to drain more quickly, sometimes in huge jumps.
  • Sensory Overload – an inability to take in multiple pieces of information at once when in the past this was something I could do with ease. Light and sound sensitivity.
  • Concentration – Varying levels of compromised concentration.
  • Other Physical symptoms: Frequent feelings of swollen glands and sore throat and general achiness.
  • Weakness: Noticably diminished physical strength during flare ups.
  • Migraines and headaches: Sometimes resulting in nausia.
  • Muscle, joint and nerve pain: This is above and beyond any other conditions such as arthririts.
  • Immune System: Noticably compromised with a tendancy to catch things that are going around.
  • Digestive Problems: Such as Nausia, constipation and IBS
  • Sleep: Poor quality sleep, tossing and turning all night and find it hard to reach deep sleep.

I was eventually diagnosed with ME/CFS. I can tell you what didn’t work – graded exercise therapy or pacing. My body refused to cooperate on a neat gradual curve. It was much more boom and bust. The physio I received didn’t help and nor did the counselling. I was left feeling frustrated and guilty that my body would not comform to their expectations. My mind was willing but my flesh was weak. I would have flare ups and I would have days that were more bearable. The only way I could possibly cope with that was to find acceptance and work with what I had.

Then, in March 2020 I almost certainly had COVID. I had a fever, cough and breathlessness for twelve days. It was unfortunately in the time when there were not enough tests to take them at home. Only those being hospitalized were being tested. In the aftermath of this I developed a rash that would come on suddenly and affected my ears, scalp, hands, elbows and feet.

Then in April 2022 I definitely had COVID, with a positive COVID test. Symptoms started two days before the test was positive. It began with a sore throat, a blinding headache and fever, then the cough came on and with it the shortness of breath. I also lost my sense of smell and taste. I was sick for two weeks, but even now, a month later, I am still struggling. The rash is back, my stamina is through the floor, I get breathless with minimum exertion and I am basically back in the middle of another ME/CFS flare-up. Long COVID is basically the same as ME/CFS in my experience.

So this leads me back to the purpose of my writing this article – Epstein Barr. On numerous occasions over the years I have had blood tests and every time my lymphocytes have come back high, indicating that I am fighting an infection. Could it be that Epstein Barr is the source of so many problems that have followed? Could it be that ME/CFS and Long Covid are connected to the presence of the Epstein Barr virus in a person’s body? Has anyone asked this question before? If so, what can be done about it?

It is my hope that this article reaches patients and medical professionals alike and that it starts a conversation or finds its way into the midst of an existing conversation of which it can become a part. I am hungry for answers. What is the relationship between Epstein Barr, ME/CFS and Long COVID? What can you tell me?


2 thoughts on “The Relationship Between Epstein Barr, ME/CFS and Long COVID

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  1. When I was sixteen and had exactly what you describe ~ my Mum had to get the doctor to come out in the middle of the night give me an injection as I was completely delirious. Six weeks in bed over the summer holidays. Since then similar outcomes to you. I realised long ago I had to avoid colds as it was never just a cold for me. I think I might have had a very mild dose of Covid in mid March ~ fully taxed and boosted. I still feel under par. I stay at home and wear a mask when out. I find Covid quite terrifying ! Go Well

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