Long-COVID – The nightmare that won't end - A researcher's first hand perspective

By Dr Kathy Raven* with the help of her family

Until very recently, I was a fit, healthy ex-rower with no past medical history. I was a highly active scientist in pathogen genomics.

But then I developed COVID-19, which progressed to Long-COVID. Here, I give an account of my experience to raise awareness of this debilitating illness.

Speeding down the ski slope in Canada, in early March I couldn’t have been happier. I was fit and healthy on holiday with my family, enjoying a long looked-forward to break after a hectic year researching hospital transmission of MRSA. Case numbers for COVID were low in the UK and Canada with no evidence for community transmission, but we still took extra precautions. Little did I know that despite all our care, a ticking time bomb had already made its way into my system and was starting to attack from within.

A couple of days after my return, I almost fell asleep on my drive home. Unusual for me, but I put it down to jet lag. I had slightly irritated lungs and a mild tickly cough shared by my family. But none of us had the distinctive fever or continuous cough so definitive of COVID at the time. A week later I found it strangely harder to breathe, and so the journey began. Fast forwards a couple of weeks and my fiancé was on the phone to NHS111, a wobble in his voice, as I sat fighting desperately to get sufficient air into my lungs. In normal times he’d have been driving me straight to A&E but with the situation in the hospitals at the time, that wasn’t an option. It had come on suddenly, a crushing, squeezing of my lungs, preventing me getting enough air in. I was not alone, over a hundred miles away my brother-in-law was doing the same for my twin sister. But the hospitals didn’t want us. They were overwhelmed. If you could still speak you should stay home. It was a dark and scary time.

Luckily my sister and I survived, where many others did not, and for that I am eternally grateful. But unfortunately we were not left unscathed. We were both left with months of fighting to breathe. Unable to complete sentences without taking extra breaths. For me it was joined by crushing fatigue, each morning waking up feeling like I’d run a marathon, desperate for a break but unable to rest. Like living in heavy chain mail – every movement a monumental effort, sometimes too tired just to reach the drink in front of me. At the same time waves of other symptoms plagued me – rapid temperature drops, shaking muscles, burning skin, oxygen drops, brain fog. New symptoms emerged, others abated, but the onslaught was continuous, and it became a full-time job to just make it through each day, a feeling I know is shared by other Long-COVID sufferers.

Eleven months later and the symptoms have very slowly improved. There’s still rarely a day that I can breathe normally, I’m lucky if I can walk more than 50m, and there are days where the stairs are a mountain. I can’t take out the bins, load the dishwasher or tidy away a couple of books, and in November, 8 months in, a new symptom started which robbed me of my ability to swallow properly. As with many in Cambridge, I often used to cycle to work, now it’s a good day if I can make a cup of tea. For those that are healthy out there, it’s worth stopping to consider the ramifications of not being able to make a cup of tea. It’s the simplest action, one most people do unthinkingly several times a day. Anything more strenuous is a write-off. And the harder you push to get better, the more the illness will absolutely bring you to your knees. I’ve learnt pacing is key, as Paul Garner wrote (1), you need to accommodate the virus, not dominate it – a wise but very difficult mantra to follow. We’re so used to stretching our way out of muscle aches and lemsipping our way out of a cold, to come face to face with something you can’t fight is difficult. Something with no cure, treatment or respite. To give an idea of just how debilitating Long-COVID can be – in August, in a good patch, I tried to chop up some vegetables. It took me a trip to the hospital clinic and 3 months to recover.

As a scientific family it’s been interesting to watch the different reactions. Of four suspected symptomatic infections, three went on to develop Long-COVID. Two have returned to relatively normal life but are still plagued by breathing issues, and then there’s me. 11 months in and counting. Why is there a difference? Why did I fare so differently in the long term to my twin sister? It’s a question that intrigues me, but the answer is as yet unknown. But she and a number of others I know with ongoing symptoms are not on anybody’s radar, I suspect some of many silent sufferers.

So what can we do now to recover? Unfortunately, the answer to that also seems to still be unknown. A repeated feature of Long-COVID is the unknown. Despite a multitude of tests in and out of hospital, nobody knows exactly what’s wrong with me. Long-COVID is a puzzling picture to which questions are usually answered with ‘we don’t know’. This includes questions such as is there any treatment and will we ever recover. Hopefully with time and research we can start to fill in these blanks.

The news of Long-COVID clinics being set up is a huge step in the right direction, but unfortunately access doesn’t seem to be that easy. I’ve been rejected by two, for being out of area or not having been hospitalised with a positive PCR test (like many who fell ill early in the pandemic). I fear many in my position will face the same. Sadly that means the longest sufferers are left without any help or route out – alone, struggling, unable to return to work or have a quality of life.

For me, I’ve gone from fighting transmission of MRSA in hospitals and whizzing down ski slopes to sofa-bound, a very difficult transition and an existence that’s hard to come to terms with. At the start of the pandemic, I was excited by the opportunity to use my skills to help in the fight against this global crisis, help to fight the virus. Instead I’ve had to wage my own personal war against it. What I find scary is the sheer numbers of other people that seem to be in my position. Previously young, fit and healthy people who now struggle to get by without help. I rely on my fiancé, who is luckily working from home, to get through each day but others are not so fortunate. People are losing their health, their freedoms, their careers and their livelihoods. This includes doctors, teachers, front-line workers. While research into the causes and effective treatments may take some time, some form of support is needed now for Long-COVID sufferers – physical, mental, and practical. It’s been suggested that Long-COVID is going to be the real next wave of this crisis (2).

I’ve given an account of my own experience with Long-COVID, which I hope will help to raise awareness of this debilitating illness, but it’s estimated there could be 300,000 other sufferers in the UK (3), with more joining those ranks every day. Some features are shared with others, others differ. But I think for all of us recognition, help, and research are key. And we need them desperately.

This piece was originally posted on Feb 6 2021 on Long-COVID – The Nightmare That Won’t End – A Researcher’s First Hand Perspective

*About the author

Dr Raven is a post-doctoral scientist in Sharon Peacock's Group at the University of Cambridge. She is a genomic epidemiologist with expertise in antimicrobial-resistant pathogens in a range of settings. In 2020, she obtained a Research Grant from the European Society of Clinical Microbiology and Infectious Diseases to evaluate routine clinical Enterococcus faecium sequencing as an adjunct to infection prevention and control.

References

(1) Paul Garnet (4 Sept 2020) 'Long Covid haul'

(2) Jacqueline Garget (22 Jan 2021) 'When symptoms don't stop'.

(3) Uk Parliament 'Long Covid', Hansard, Vol 587, 27 Jan 2021.