Living with long COVID: “One year on, I still have symptoms.”

While the vaccination program is making headway in dampening down the virus in the UK, anxiety is still rife and experts are still scrambling to understand the true mechanics of COVID in the long-term. For some, flu-like symptoms merely last a day. For others – even a year on – the unwelcome presence of COVID lingers. To shed further light on this harrowing situation, we spoke to Dr Luke Pratsides, lead GP at Numan, as well as Isaac, who’s had symptoms of COVID for over a year, and George, who also suffered from persistent fatigue after contracting the virus.

When we asked Dr Pratsides what we know so far about long COVID, he sighed: “We don’t know enough. Long COVID has been defined as any symptoms that persist after 12 weeks of contracting the virus.

What we know about COVID is that it’s extremely variable. Some people have a short illness that barely lasts a week. They often display symptoms similar to the flu such as a cough, fever, muscle aches and pains. Whatever it might be, it soon resolves itself. But for others, an aspect of that illness – or sometimes new symptoms – are present for weeks, even months, after. We’ve seen people develop skin rashes, joint pain, brain fog, chest pain, breathlessness and difficulties sleeping. It can affect any part of the body. The big one that I’ve come across when it comes to long COVID is persistent fatigue, where they feel like they have a fraction of the energy that they used to have.”

This has unfortunately been the case for Isaac, who contracted COVID over a year ago and has no previous underlying health issues. He’s fluctuated between recovery and relapse, which continues to this day: “My initial symptoms were extreme fatigue, a sore throat, fever, night sweats, chest pain, and ‘COVID toe’. Later, I developed heart arrhythmia, dizziness, lightheadedness, indigestion, vomiting and muscle pain. Fatigue, sore throat and muscle pain have been the symptoms that have stuck with me over the past year. Some days it can be completely debilitating. I’m unable to do any exertion, physical or mental, for more than 30 minutes without needing a rest – even just a phone call. I’ve been unable to do much at all without relapsing.”

George, who was also in good health before contracting COVID, suffered from severe fatigue, as well as breathlessness: “I had to take time off work and couldn’t exercise for a while after. Running – even walking – became arduous. I had a metallic taste in my mouth, was sensitive to light and felt nauseous.”

Dr Pratsides, who also works for the NHS in East London, has seen young, healthy patients in extremely poor health after catching COVID: “I’ve seen a patient in her 30s who becomes severely out of breath since catching the virus. She has no history of poor health and is physically fit and healthy. I’ve done chest x-rays and all sorts but there’s nothing to indicate that there are any complications that aren’t related to COVID. When it was at its worst, she’d have to sit on the end of her bed getting her breath back, solely from trying to get up in the morning. The breathlessness is a little better but she’s still struggling with day-to-day activities, including washing, dressing, and any other basic tasks. Even taking a short walk leaves her breathless.”

Although COVID-19 is a new virus that’s never been seen before, the long-term effects are alarmingly similar to chronic fatigue syndrome, or ME, a condition that causes extreme tiredness and can make simple day-to-day activities impossible. As there are no tests to determine whether a patient has chronic fatigue syndrome, and body parts are usually functioning as they should be, it’s a difficult condition to diagnose.

We asked Dr Pratsides if COVID-19 has changed the way we think about chronic fatigue syndrome: “COVID-19 has brought it to the forefront,” he explained. “There’s now some evidence coming out that chronic fatigue syndrome could be linked to a previous viral infection. There’s a lot more awareness now that a virus such as this can cause these devastating long-term effects. More and more people are coming forward.”

After displaying symptoms consistent with chronic fatigue syndrome, Isaac was referred to a clinic that specialises in the area: “Fatigue was the stand out symptom for me, so I was referred to one of these clinics. I’ve found that pacing myself is the key. A couple of times I tried to ‘get back to normal’ and incurred big setbacks because I was pushing myself too hard, too soon. I kept landing back in bed. It’s incredibly frustrating. But I learnt not to overdo it and rest when the symptoms worsen. Aside from the clinic, I’ve had advice from nutritionists on the best diet for the condition. It’s helped enormously.”

In response to the situation, the NHS has set up specialist long COVID clinics. Dr Pratsides explains: “They tend to be led by respiratory doctors because it’s a respiratory illness but then you’re getting all these other problems with long COVID (like joint pain and skin conditions) so they’ve become multidisciplinary clinics where various expert specialists are called in. I guess the sad truth is that it’s going to take some time and a large number of people experiencing this condition for us to truly understand what’s causing it.

“Worrying evidence has emerged that people from black and ethnic minority groups tend to have a more severe illness. The truth is, we don’t know exactly why. There was talk of vitamin D having a part to play, but studies haven’t proven a firm link. But there’s no question that black and ethnic minority groups are disproportionately affected and it’s probably a mixture of underlying medical reasons but also socio-economic reasons. There’s a lot of work that still needs to be done on that. I’ve seen this ethnicity disproportionately in my practice, without a doubt. It’s a really big thing.”

George describes having the virus as the illest he’s ever felt: “It gave me a renewed respect for the situation at a time when sentiment and measures were easing up. I feel I was always sensitive to it and sensible about staying inside and practicing social distance when I did head out. Even still, I didn’t appreciate the severity until I got it myself.”

For Isaac, the experience has been difficult to grasp: “I can see why people doubt you because I struggle to understand the concept myself… But this is real, whatever anyone tells you. Listen to your body and don’t push yourself too hard. You risk a serious setback. The pacing regime has given me structure and helped me without a doubt. One year on, I still have symptoms, but I’m seeing improvements, which I hope will continue. As more cases come to light, I’m optimistic that treatments will be found.”

Dr Pratsides advises anyone who thinks they have long COVID to visit their local GP: “Your GP is the gateway to these long COVID clinics. They’ll do an initial assessment and can try to treat or ease the symptoms, whether that’s painkillers for joint pain, or an inhaler to open up the airways to help with shortness of breath. Various measures can be taken to make life a little easier. But it’s important to get into these long COVID clinics so you can have ongoing specialist treatment.

“It’s all about not suffering in silence. People suffer in silence a lot. Living with this condition is going to have a big impact on a person, especially someone who is previously healthy and can no longer walk a short distance, dress, cook, wash, or do any simple task without feeling desperately tired. It’s a big shift. GP surgeries are open so don’t feel like you can’t contact the NHS because of the pandemic. The NHS is still there for you. You don’t have to do this alone.”

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