Long-running fatigue: my EBV journey (so far)

It’s a typical Sunday in 2021 and I’m out on my long run on the weekend. Today it’s ‘only’ 15km, and my Strava entry betrays the guilt I feel at this. ‘Long run, split into 3 parts. 10km yesterday, 15km today, 16km tomorrow’. The subtext reads that I am trying, but know I am falling short. I make up for it by running faster than I should. My week finishes and I have run over 50km. This is normal. 

Exactly two years later my boyfriend drives us to Clevedon, a pretty town on the seafront, just 30 minutes from our house. We head out for a walk, me setting the pace, the distance and dictating pretty much everything else about the day. I manage 5km. I am delighted, elated, and exhausted. I could cry with happiness. I nearly do. 

The Clevedon walk is the first time I have left the house for anything other than a short dog walk in weeks, and my brain, to its credit, has allowed me to see this as a win, rather than a depressing regression from years gone by. 

This fall from fitness hasn’t been a sudden transition, but the power of denial has allowed me to endure seven months of challenges that most people would consider impressive even at full fitness. I have run three ultramarathons (races over 50km), completed mountain races and stage races back-to-back and even completed a 32km fell race with borderline sepsis, simply because I thought I was being dramatic. Three weeks prior to the Clevedon walk I was running in the mountains, attempting to complete 55km and 3500m of mountain running from Orsieres in Switzerland to Chamonix, France, as part of the largest and most prestigious week of the trail running calendar, UTMB. Before catching the train to Chamonix I know I am ill, but it’s not every day you get the opportunity to run this race, and I have the added excuse of not being *officially* diagnosed yet. At the end of August I set off on the run, with the knowledge that I can drop at any aid station, and I probably won’t die. Probably. 

2023 started strong. I was early in a training plan for an 100km mountain race across the Lake District and while I wasn’t seeing the progression I was hoping for, my mileage was consistent, and I had months until the race. Plenty of time to see improvements. Except I continued training hard, and I continued falling short.  

In February, I started experiencing heart palpitations on several of my runs, combined with increasingly frequent extreme fatigue. I immediately book to see the doctor. Like most regular runners, I am hyper aware of my body. I know what a given run should feel like at a given pace, I know all the usual aches and pains, and which might turn into something longer lasting. I know, within about 3bpm, what my heartrate is doing on any particular run and understand when to pull back and give it a rest. 

So, when my runs are disrupted by the feeling of my heart beating out of my chest, I am not reluctant to speak to a doctor. I was keen to get answers, so I might be able to start running again, and know what I could do safely. It took a couple of months to receive an ECG and Echocardiogram, and although frustrated by the wait, I will forever be grateful for the NHS for providing them, free of charge. The results were simultaneously frustrating and reassuring – there was nothing wrong with my heart. It was healthy, as would be expected for a young, fit person. But that didn’t explain the pain, nor the related fatigue. 

I was told by the doctor that what I was feeling was likely my heart beating faster, because I was running. That’s just what happens when you exercise! My fatigue could be explained by all my training, even though by this point I was hardly running at all. I could barely contain my frustration at this condescending explanation. I am not alone here. Women, especially, have a history of having their pain dismissed, with a survey showing that 84% of UK women feel they have been ignored by healthcare professionals. When it comes to poorly understood illnesses like Long Covid and CFS/ME, the vast majority of patients have experienced some level of gaslighting. All of these are plagued by a “legitimacy deficit”, leading to a lack of funding, and few diagnostic tools to fully comprehend, diagnose and treat these illnesses. 

Regardless, I managed to find a routine that worked to keep the heart pain at bay. Easy, regular runs allowed me to keep my mileage up without stressing my body, and while it meant that I wouldn’t be as fit as I had hoped for my 100k, I figured that the mileage alone would see me through. 

The Lakes Traverse 100k is beautiful, but gruelling. With 3500m of elevation gain, it’s not quite alpine, but it’s certainly hilly enough to feel it. Due to my severe lack of hill training, I had my first ever DNF (did not finish) at 60km. It wasn’t the problem with my heart that stopped me. In the end, it was the waiting for answers and fear of pushing myself that meant I got to the start line under-trained and over-cautious. But the miles I completed that day left me feeling surprisingly capable and strong. Despite everything, I’d managed my second longest run ever, and not experienced any heart palpitations. I had high hopes for my next race, 3 weeks later. 

The following race was a stage race – 50km of running on day 1, followed by 65km of cycling and 6km of running on day 2, followed by 35km of kayaking and 6km of running on day 3. The running part was a breeze, and although the rest was tough, I enjoyed almost every second of it. Another small triumph. 

Predictably, once my body knew its job was done, it fell apart, and I got some sort of flu that left me exhausted. Two weeks before Ultra-trail Snowdonia, I decide to drop down to the 25km option. Even the most optimistic part of my brain is unable to convince myself that trudging through 55km of mountain terrain with flu is a good idea. It turns out even 25km is a stretch for my battered body, and although I enjoy the scenery and the challenge, my heaving lungs and dripping nose make it clear from the start that even an easy 5k would have been a big ask that day. And UTS is far from an easy 5k.

UTS concludes my spring season of races, and it couldn’t have come soon enough. From then, I focus on getting well again – prioritising rest, initially, then slowly building back into a training plan, ahead of my big race in August: OCC. During this training block I am determined to successfully walk the tightrope of sufficient training and rest, in order to arrive at the race ready and rested. I get good sleep, eat well, take my vitamins, hydrate sufficiently, go to the gym, run hard but not too hard, and rest even harder. Initially it seems to work, and I see big progress in the weeks following my time off. But one day it all comes crashing down, and from then, each day is a struggle. After one run I hit some sort of wall, and no amount of rest can bring me back to life. 

If you’ve never experienced fatigue, it’s difficult to explain. Although superficially similar to tiredness, it is a much more full-bodied experience. It robs you of motivation to complete even simple, non-physical tasks, and for me at least, can feel like I am in a constant waking dream. Fatigue is being completely and utterly exhausted, though not usually from lack of sleep, and most people will experience it at some point in their life. 

Fatigue is estimated to cost the US $36-51bn, and the UK £100mi in productivity losses alone each year, and significantly more in healthcare costs. Why is it, then, that we dismiss fatigue as ‘just one of those things’? 

It took me 8 months of recurring doctor’s visits and blood tests (mostly private) to receive my own diagnosis; Epstein-Barr Virus, a virus that most of the population has in their system but that, for some, causes long-lasting effects. EBV is the virus that causes Mono, or Glandular Fever, and for some reason, can cause persistent fatigue in some people. I received my diagnosis 5 months ago after 8 months of symptoms, and aside from being offered anti-depressants to manage the emotional turmoil of going cold-turkey on exercise, I never heard from my doctor again.

Since 2020, there has been some increased interest in chronic fatigue, but it is not a new phenomenon. In the 1980s, the rise in burnout of high-achieving city workers was dismissed as ‘yuppie flu’, a psychosomatic case of hypochondria, often misdiagnosed as depression or anxiety. 30 years prior, the term “Myalgic Encephalomyelitis” (abbreviated ME) was coined following an outbreak at London’s Royal Free Hospital in 1955. Long before then, in the 19th and early 20th centuries the name “neurasthenia” was used to refer to a similar illness. The term ‘chronic fatigue syndrome’ (CFS) was used from 1987 to refer to the cluster of similar symptoms, likely with varying causes. And then in 2020, the term ‘long covid’ came into the vernacular, to describe people severely affected long-term with (among other things) fatigue, brain-fog, poor sleep and/or pain, following a bout of Covid. 

Thanks in part to the lack of objective biomarkers in each of these illnesses, many have been led to question whether the illnesses are “real”— whether people might be imagining or even fabricating their symptoms. But the effect on the people suffering is undoubtedly real enough, and the implications (both personal and economic) are far-reaching. 

Mercifully, my own symptoms are starting to subside. Although progress feels glacial, I think back to the Clevedon walk and how it left me sofa-bound for days afterwards, and remember how that was a good day for me. I remember the first day I was able to take our house stairs two at a time for the first time in 6 months, and how I nearly cried when I realised. This week I did three runs, for the seventh week in a row, and so far, am still upright. 

CFS, ME, long-covid, EBV and all related illnesses are insidious, complicated beasts. They are typified by their unpredictability and randomness. Fatigue is a rollercoaster in the fog; you can’t see what’s coming up, and just as you start to think you’re safe, your stomach drops and you come crashing down again. Fatigue is a rollercoaster and you’re just along for the ride.

While I am far from being able to run ultramarathons again, I am buoyed by the rapid output of studies discussing long-covid and similar illnesses, and hope that one day, someone presenting to the doctor with the same symptoms as me will not have to wait 8 months or more for a diagnosis, or feel dismissed and alone when they do. 

I am still running, attempting to slowly train up for a marathon from scratch. The re-calibration of ‘easy run’ pace or ‘good mileage week’ has been a real trip for my ego, but isn’t that what running is about? New challenges require new solutions, and this year will be about adapting to the unpredictability of life while training for a marathon. And in that way, it’s no different to any other year.