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?

Olivia

Emergence

We’re hearing from experts in the field of psychology and mental health who are warning us of an epidemic that is on the horizon. This isn’t the pandemic. This isn’t an impending third, fourth or even fifth wave. This is a global mental health crisis on a level that we have never seen before, and almost everyone is feeling it.

As someone who is no stranger to mental health issues, I entered the first lockdown in March of last year in a surprisingly calm state of mind. I embraced the quiet and the solitude. I sought to find the beauty all around me, to treasure every moment, and to take advantage of the world standing still. My head became so clear that I was able to write a book in just under six weeks, something which up until that point I had struggled to accomplish in a little over a decade of trying.

Of course, it helped that the weather was absolutely gorgeous and the whole of nature seemed to come out to play with a greater exuberance than I had seen in a very long time. Or was it just that my world was previously too noisy and too cluttered for me to notice? Anyway, I had my encounter with a Queen Bee, I went for walks in the stunning countryside that surrounds my home, I sat in the shade of my garden studio while the waterfall bubbled into the pond and the bees buzzed from bloom to bloom and felt quite content.

But then came the somewhat messy and hesitant emergence from those first three months. I’d lost three friends in the beginning of the pandemic and countless others that I knew had lost family members. I didn’t realise how sheltered I had become, and how for many others life had just carried on. From a social perspective I had been left behind. So much so, that on my first day out of my cocoon I had a massive panic attack and wondered if I would ever step out in confidence again.

But within the new limits of social distancing, I soon learned what I could cope with and what I could not. For example, I wasn’t ready to go swimming again, but providing the restaurant was spacious enough, I was happy to have dinner with a friend. I was even fortunate enough to get to go for a short holiday in September. The weather was amazing and I even took a trip to Highclere Castle for all your Downton Abbey fans.

But then came the headlines, “Christmas cancelled,” and with them the hopes and plans of millions. That was a low blow for the nation. Some reacted in despair, others in anger, while some, like me, girded our loins and kept calm while we carried on, preparing to take one for the team in order to provide for the common good.

January brought with it dark days and cold nights. For myself personally, it also brought me close to losing my mum after a bad fall from a ladder and catching COVID in hospital. Where was the honey bee now, where the bubbling waterfall, where the clear headed writing? This sucks. Sod keeping calm and carrying on, sod showing the British resilience akin to the forbearance of those caught in the Blitz, this is really really hard.

As I emerge from yet another lockdown, as I go out into the world, I will confess to having a small amount more confidence than I did last summer. I’ve had one dose of the vaccine and should have the second in the next few weeks. There is that thin veil of protection, that increase in probability that if I caught COVID now I might yet live. 

You would have thought that would make this emergence thing easy. But in reality it is still really hard. Everything I once knew to be true has shifted. I can’t remember the last time I had my five a day, and my body is really suffering because of it. I don’t mean fruit and veg. I mean hugs. Will the word tactile cease to exist in this new world? Where will affection find its way? Am I the only one who is feeling more isolated than I ever have before now that we are coming out of lockdown? Am I the only one who is struggling, whose anxiety is through the roof?

And in the midst of so much uncertainty, in the midst of so much grief, it’s easy to look at the horizon and feel like we are all at sea. It’s easy to feel that there is nothing out there which is permanent, reliable, and built on rock. The shifting sands of our current existence lead us to being anxious about everthing, fearful about much, and struggling to look forward.

Yet that’s all I have left. Hope. To dream of a time when we will be able to hug one another in greeting again. To dream of a time when the smile on the face of an old man as he takes his wife round the supermarket will touch my soul and cause it to sing, when we’ll be able to plan freely and look forward, and dream up a world in which we can live that is better, kinder, freer, and more joyful than the one we face now.

In the mean time, as trite as it is to think that misery loves company, we do share in a common struggle. So long as we keep it real, listen to one another, and be patient and kind, we will remember that we’re all struggling, that this is hard for everybody, and it’s in our pain that we receive our five a day and we find our common ground and know that we may be isolated, but we most definitely are not alone.