The curse of Long Covid

She is experiencing long Covid, the condition of suffering the effects of the virus weeks after initially falling ill. In some, the virus behaves similarly to an auto-immune disease that attacks the heart, lungs, kidneys, nervous system and skin. Sufferers report symptoms ranging from breathlessness, chronic fatigue, body aches, palpitations and “brain fog.” What’s more, the symptoms can come, go and return.

“It can be so debilitating that caring for children, returning to work or even gentle exercise are impossible,” says Sharon Taylor, physician and lecturer at the Imperial College School of Medicine. “Most people know that Covid-19 can cause a mild illness lasting a few days, similar to a cold, or it can become severe and lead to hospitalisation or even death. But there’s a third type of Covid-19 in which people get infected, do not end up in hospital, but go on to have long-term symptoms.”

According to most estimates, one in ten people experience symptoms more than three weeks after infection, and around one in 50 after more than three months. This means that right now there could be as many as 60,000 long Covid sufferers in the UK. Women are more susceptible than men and it is most common in those of working age. Last week the results of a research study were announced, identifying women aged between 50 and 60 as the most likely group to develop the syndrome.

Before Andrea Berlin, 36, fell ill on March 17, the recruitment consultant was in excellent health. “I took regular walks and, coming as I do from a family of doctors, totally knew the importance of eating a balanced diet.” Now the Golders Green Synagogue member sees a neurologist, an endocrinologist, an immunologist and a private GP to help her manage the wide range of symptoms she experiences more than six months after she contracted Covid-19.

“The worst thing is the crippling post-viral fatigue. But I still don’t sleep well and get body tremors after I’ve been sitting up or standing for too long. I’m trying to work two mornings, but the truth is I can’t do my job or look after my three young children properly. This disease has changed my life out of all recognition.”

It has changed Gabbie Asher’s too. Around six weeks after she first fell ill with the virus in March, her symptoms had subsided enough to mean she could occasionally get out of bed. “I could move a little, even though I still had a sore throat, low-grade fever, and had lost my voice entirely.” But one particular symptom wouldn’t subside at all: the script writer, who’s in her 40s, says she couldn’t walk for longer than a minute without a feeling that bubbles were forming at the back of her throat and on top of her chest. “It felt like swimming underwater without being able to surface again.” As late as August it was still bad enough for her to be unable to “get any proper work done. And on top of the bubbling thing, I still had terrible fatigue, brain fog, muscle ache and breathlessness. I couldn’t have even done this interview — my voice was too weak, and it would have been hard to order my thoughts.”

Asher is now able to put fingers to keyboard but says if her job entailed any more physical activity she would not be back at work. “If I rush around for one day, I’m totally out of action the next. Some days are so bad I can’t keep my eyes open. It’s hard not to think — when will all this end?”

The answer to this question is: we don’t really know. It has taken time for the medical community to recognise the long-term effects of the virus, and they are still far from being fully understood. But Professor Tim Spector, one of Britain’s leading Covid scientists, has warned that the effects of long Covid could “turn out to be a bigger public health problem than excess deaths from the virus, which mainly affect the susceptible elderly.”

In the absence of medical understanding of their experiences, these long haulers, as they call themselves, have taken to sharing their experiences and resources online on platforms such as Facebook’s Long Covid Support Group, which has 28,000 members.

But more specialist help is, hopefully, on the way. The head of the NHS, Sir Simon Stevens, has announced a £10 million plan to kickstart long Covid clinics where people can get personalised treatment plans for how to live with the illness.

For Debbie Dwek, 53, the new clinics can’t open quickly enough. “We need help to get better. It’s now 28 weeks since I came down with the virus and I still suffer with terrible fatigue, brain fog, memory loss, breathlessness, insomnia, palpitations, tinnitus and a chest pain that wakes me at night in panic.”

Back in June, Dwek’s GP offered her antidepressants to cope with her symptoms. When she said no thanks, he suggested writing a daily gratitude diary instead. She declined this suggestion too: “I’m sure writing a fury diary would have been more cathartic.”

Meanwhile, she has not had a single face-to-face meeting, or FaceTime consultation, with a doctor for the duration of her illness. “Right now, I’m waiting for a referral to a respiratory medical team and to hear if I can see a consultant at the Royal Free to discuss my symptoms. Accessing any kind of treatment has been a very slow process.”

Before her infection, Dwek has what she describes as a “busy, cheerful life. I did four exercise classes a week and went on weekly 5K park runs. Now I’m out of breath when I walk up the stairs and I have to sit down several times when I take the dog for a walk. I have never felt so useless, or full of despair. Crystal water bottles, rock salt lamps, concentrated aloe juice and remote reiki sessions, I’ve tried them all -— when you’re desperate, you’ll give anything a go.”

Two weeks ago, the Finchley Progressive member had a few good days. “I had more energy than in the past six months, and thought I’d finally turned a corner. But then I crashed again. This is the nature of the beast. You think you’re on the mend, and then it comes back for you. At the beginning of the pandemic, the government told us it was like getting the flu. If only.”

Retired consultant Robert Ginsburg agrees the flu analogy was unhelpful. “Seven months after I fell very ill with this virus, I still feel drained all of physical and mental energy. I’m someone who has always done a lot of DIY in my life. Now there are days when I can barely get out of bed. Mild allergies I’ve had all my life are now acute. If I eat any fructose, corn starch, inverted sugars or brown sugar, the things you find in most processed foods, I get an intense itching on my face, scalp and upper body.”

“I spent more than 30 years working in the NHS as an anaesthetist, caring for gravely ill patients in intensive care and the operating theatre,” says the Golders Green Synagogue member, who is 69. “None of that prepared me for my own critical illness and the depths of despair to which I’ve sunk since meeting this coronavirus.”

Adina Gerver knows how he feels. Before the pandemic she had a portfolio career that included editing complex Jewish legal texts, freelance writing and 20 hours a week as an office manager for a Jewish congregation in New York. Now, the previously healthy 41-year-old manages a few hours’ work a week at most.

“It feels like someone has unplugged me, like my battery has run out.” And the really frightening thing, she says, is that doctors don’t know what to tell her. “I’m scared that this will be the thing that dogs me for the rest of my life.”