For the growing number of people diagnosed with 'long Covid', living with the after-effects of Covid-19 has been harder than the virus itself. Photo / Nik Shuliahin, Unsplash
For the growing number of people diagnosed with 'long Covid', living with the after-effects of Covid-19 has been harder than the virus itself. Photo / Nik Shuliahin, Unsplash
Many are so fatigued they have barely been able to walk upstairs for months, others still get short of breath from the simplest task, and for some every bite of food that passes their lips tastes of ash.
For the growing number of people diagnosed with what is known as long Covid, living with the after-effects of Covid-19 has been harder than the virus itself.
Now, experts say it could turn out to be a bigger public health problem than the excess deaths that have occurred since the start of the pandemic.
Professor Tim Spector, Professor of Genetic Epidemiology at King's College London and the scientist behind Britain's symptom-tracking app, says long Covid sufferers could turn out to be the real public health fallout of this period.
These so-called "long-haulers", with quietly debilitating symptoms that baffle doctors and prove difficult or even impossible to treat, have shown that the virus can act like an auto-immune disease in some, affecting multiple parts of the body long after the initial illness subsides.
Research suggests there are six distinct "types" of Covid-19, each distinguished by a cluster of distinct symptoms. Photo / AP
Researchers, along with the health-science company ZOE, tracked data from more than four million people and found that one in 10 sufferers had symptoms of long Covid for a month, while one in 50 were found to be suffering at least three months later.
"This is affecting working-age people who have families and are providing crucial money for the economy, and they're being taken out of action," Professor Spector says.
"If you compare it in public health terms, that's much greater than the unfortunate deaths in people aged over 85.
"Most of those deaths would have happened anyway with flu, but these events wouldn't," he adds.
Data extracted from ZOE has revealed there are six distinct "types" of Covid-19, each distinguished by a cluster of distinct symptoms.
Some of these, such as confusion, abdominal pain and shortness of breath, are not widely known as Covid-19 symptoms, but the company says they are "hallmarks" of the most severe forms of the disease.
"We still know very little about the long term consequences [of the virus]," Spector says, though one similarity [long Covid] sufferers often share is that they tend not to have been hospitalised with the virus.
He points out that in the early days of the pandemic, little attention was paid to the 99 per cent of cases who were infected, but not ill enough to go to hospital. Now, their recovery is crucial to understanding more about the ongoing effects of the disease.
Here, we speak to six people who are yet to fully recover from their bout of Covid-19.
'Some days I can't manage a shower'
Amy Durant, 31, London
On March 14 I first began experiencing Covid symptoms, and I haven't had my life back since then.
It was a fairly textbook case. Fever, body aches, a few days later a cough, then a couple of days feeling better before the onset of some pretty scary breathing problems which at one point got so bad the paramedics had to be called out to look at me.
After a couple of weeks I was back on my feet and started going through the motions of normal life again. But unlike before, where I went for regular runs, saw friends and thrived from the buzz of running my own company, I found myself with very little energy. My chest ached and my body still felt all wrong, but I pushed through. By May, I crashed completely.
Since then, I've been on this strange rollercoaster where I can have a couple of good days when I can manage doing emails and going for a walk with a friend, and then it's back to square one and my chest hurts, my breathing is off and I can't get out of bed.
I'm an editor, and I haven't been able to read properly for months, which is devastating.
A CT scan has revealed some damage in my lungs. Some airways have narrowed from inflammation so I've been put on a daily inhaler. Some days I can't manage a shower.
Occasionally I feel hopeful, but each time I crash back down it's harder to take.
'I could intensely smell soil for months'
Richard Forsyth, 49, Wiltshire
In March myself, my wife and my children, as well as my sister and her husband all developed the typical Covid symptoms. There were the fevers, the lack of taste and smell, black eyes like you had been punched in the face, persistent coughing and, as my wife put it: "It's like you forget how to breathe".
Numerous 111 calls, dashes to Covid units, X-rays and paramedics later, we all crawled our way through to the other side. Or so we had hoped.
My sister has been left with intense lung pains and now has asthma, often going for a walk and later that day collapsing in bed from the overwhelming fatigue. My son has heart palpitations and shortness of breath.
I have developed cluster headaches, one of which the A&E doctor I had been rushed to first presumed was a mini-stroke. We are learning that Covid lurks and rattles around.
For months after the illness I could intensely smell earth in my sinuses, like I was breathing in soil. But I was comparatively lucky, I felt, compared with my wife and my sister, who were rushed to hospital.
The earthy smell has finally gone but I still have phases where I don't feel quite right: deep muscular pains, strange smells that don't make sense and overwhelming fatigue.
Maybe these little sufferings have nothing to do with that battering by Covid, but it feels instinctively like they are all part of its toll.
My job as an NHS nurse meant my exposure to the virus was always reasonably high. While I was lucky to receive proper PPE, some of my colleagues were given just an apron and surgical mask, and my FFP3 face mask was never fit-tested because I was not a frontline clinician, even though I walked up and down the Covid ward, taking blood samples from patients for research purposes. So it was no surprise when, in early April, I noticed a persistent cough.
For four weeks, I felt constantly short of breath, with a tightness in my chest. I was unable to carry out even the simplest household chores (particularly challenging when you live alone, as I do).
After that, I assumed, the virus would pass and I could return to normal. But I've been in it for the long haul. The most serious symptoms have subsided – thankfully, I no longer feel like my lungs are full of fluid – but I still become exhausted at the slightest physical exertion, like walking from my house to the car.
Unable to return to work, I've essentially become housebound. Tasks so small as climbing the stairs or cooking a meal have to be planned in advance, and broken into manageable chunks.
I'm optimistic that doctors will learn more about long Covid, and how to treat it. But research can take years - time I don't want to waste indoors.
For five months now I've felt as if my body has been taken over by a kind of poison. I had Covid at the start of May – I contracted it the same week my mother died from the virus – and spent two weeks in bed, grieving for my poor mum while sick myself.
Covid was like no illness I'd ever had; I suffered terrible fevers, chest pains and all over aches that made me feel as if aliens had entered my bloodstream. I felt as if I'd been hit over the head with a mallet. There were a couple of times when I honestly felt I might die.
Eventually, the most acute symptoms subsided, but to this day they have never entirely gone away.
The past few months have been a living hell, as I have remained too ill to go to work as a press officer for a charity, and sometimes even to get out of bed.
I've had terrible fatigue that often leaves me confused and unable to focus. If I over-exert myself, which I can do simply by crossing a room too fast, my body aches all over.
I've had to relearn how to do everything – even how to unstack the dishwasher with the minimum number of journeys around the kitchen.
One day my veins were so swollen my doctor sent me to A&E as he thought I was having a stroke or had a blood clot. My sense of taste and smell still haven't returned. Instead, my mouth permanently tastes like off, sweet garlic.
I tried a glass of wine the other day and it tasted of chemicals, and I can often smell cigarette smoke even when no one is smoking. I used to love my food.
You just think, what else are you going to take away from me? I've had numerous tests but they all come back clear, which I've read other long Covid sufferers report. I don't understand what's happening. I just want my old body back.
'Severe dizziness has landed me in A&E twice'
Paul Power, 52, Merseyside
When I contracted Covid in late March, a week spent in bed with flu-like symptoms made me think I was one of the lucky ones. I started to feel better, and was keen to return to my energetic life as a police firearms officer, where I regularly have to undergo fitness tests. But when I tried to re-embrace my jogging routine, I became immensely tired.
I left it a few more weeks, and this time tried cycling. Again, I struggled to complete a short journey, hampered by a painful tightness in my chest.
Over the last few months, an unpleasant and frightening pattern has emerged. My breath becomes short at the slightest exertion; my joints are sore from arthritis. I suffer disorientating bouts of severe dizziness, which have landed me in A&E twice so far.
My blood oxygen levels drop when I carry out a mundane task, like putting out my washing. Worst of all, I've been unable to return to work: it's difficult to write emails, and in conversation I find myself repeating the same sentence twice.
For three months I was unable to see an NHS GP face-to-face, and when I eventually secured an appointment he suggested the symptoms were psychological. I paid for a private GP, who diagnosed me as "clinically post-Covid".
I was prescribed steroids for my chest, which helped, but I still have to wait months for specialist heart and lung appointments. The Government talks about post-Covid clinics, but there still seems to be no NHS provision. I hope that soon I can return to the active life I once loved.
I got Covid shortly before the country went into lockdown, in that frightening period when if you got it you really had no idea what might happen.
I began to feel achey, generally fluey and started having problems with my sinuses. Then the sudden, dry cough came, though it didn't last long.
It wasn't until day seven that I started having real problems with my breathing. It was dreadful, I'd be completely still working at my laptop but suddenly I'd be gasping for breath, not knowing what was going on.
I've had asthma all my life but this was nothing like I'd experienced before. My GP gave me breathing exercises over the phone and prescribed double doses of the steroids over a few weeks which usually help with asthma flare ups.
Normally, pretty soon after taking them, I'd think "oh thank goodness" and feel some release. This time it didn't touch the surface.
Six months on, and my airways still aren't right. Sometimes I feel bewildered. How can it still not be better after all this time? Sometimes you can go a couple of days feeling a bit more normal, but then out of the blue you'll wake up one morning and it's right back to square one.
I can be sitting down and find myself struggling to breathe. I'm a primary school teacher and have gone back to school, it is lovely to back in a working environment but I am having to take extra care and precautions in such a busy place. It's so mentally tiring because you're constantly wondering about when you're next going to lose your breath.
I'm scared of getting it again, or of getting just a normal winter bug that could exacerbate the symptoms. My GP practice has been so supportive but even they seem to be at a loss. One genuinely said "I don't know what to do for you next" and is seeking further advice.
I just want some reassurance that this isn't just my life now. That at just 50 it won't be like this forever and further treatments can be found.
Coronavirus symptoms, then and now
By Helen Chandler-Wilde
At the start of the pandemic, the most common Covid-19 symptoms were a temperature, a dry cough and tiredness, according to the World Health Organisation. The UK's National Health Service (NHS) broadly agreed. But over time a variety of others have emerged.
The main symptoms recognised by the World Health Organisation in January:
Cough: In particular, a dry cough which is tickly but doesn't bring up any mucus. The NHS advises anyone with a "new, continuous cough" to isolate.
Fever: Anything above 38C (100.4F).
Fatigue: Overall lacking energy without a clear reason why.
Now, in addition to the above, there are reports of many other symptoms, including:
Loss or change in smell or taste: In the spring, this was added to the NHS's official list of symptoms after the prevalence of this complaint in Covid patients.
Stomach upset: Vomiting and diarrhoea are common in Covid-19 patients, especially children, according to a study from Queen's University Belfast, which found that using just cough, loss of smell and fever to diagnose children only caught three-quarters of cases. Adding stomach problems increased that to 97 per cent.
Headache: Also common in children – over half of symptomatic young sufferers had a headache, according to new research. It could be an early symptom of the virus.
Delirium: Particularly common in frail people over the age of 65, according to studies. They might feel disorientated, confused and struggle to speak properly or remember things.
Conjunctivitis: A rarer symptom which usually occurs later into the progression of the infection.
Depression: Some sufferers have reported low mood with Covid-19. It is not yet known how this may occur, but there is long-standing evidence of viral infections affecting mental health.
