When the novel coronavirus began to spread across the world in February 2020, Freya Sawbridge was caught in a bind. The 27-year-old was living in Scotland, but when businesses and borders began to close she packed up and flew home to Auckland, New Zealand. On arrival, she felt feverish and couldn’t smell or taste food.
In those early months of COVID-19, every new symptom made global headlines. Freya got tested and the result came back positive. Panic began to set in. “I was in the first wave,” she says.
“There weren’t many people that had had it by that stage, so I knew no-one could tell me anything about it, no-one could offer me any real guidance because it was a new disease.
“No-one can tell you anything about it or when it might end. You’re just existing in the unknown.”
Freya found herself on a vicious merry-go-round of symptoms — fever, sore throat, dizziness, muscle spasms, numbness, chest pains and fatigue. The symptoms kept coming around and around and around.
After 12 days, she stabilised, but four days later the pains returned with a vengeance. It would be a sign of things to come. Freya would relapse five more times over the next six months.
“Each relapse, the depth of it would last about 10 days and then I would take about four or five days emerging from it, have about two or three symptom-free days before another relapse would kick off,” Freya says. “The symptoms would come and then dissipate…
“I’d have a fever for an hour, a sore throat for four hours, then dizziness for two hours, then I was OK for an hour.
“…it was just a cycle like that.”
By April 2020, “long COVID” was being mentioned in Facebook support groups. It’s not an official medical term; it was coined out of necessity by the public. It’s sometimes also referred to as long-haul COVID, chronic COVID and post-acute sequelae of COVID-19 (PASC).
Exactly what constitutes long COVID remains extremely broad. Earlier this month, the World Health Organization released its clinical case definition of what it calls ‘post COVID-19 condition’, which affects people at least two months after a COVID-19 infection with symptoms that “cannot be explained by an alternative diagnosis”.
For Freya, symptoms like chest pain and a sore throat were manageable, but the dizziness and “brain pain” she experienced were debilitating. “It’s as if there was like a mini person in my brain and he was scraping my whole brain with a rake, it was just pain,” Freya says.
“And then it would feel like it would flip on itself continuously and so it makes it really hard to sleep because you’re lying there and it feels like your brain is doing somersaults and then it’s also spinning.”
The memory loss was especially unnerving. “Heaps of people say, ‘Oh, I get that and I’m young,’ but it just feels different… you’d be mid-sentence and then completely forget what you’re talking about.”
Doctors couldn’t give Freya any clarity about what was happening to her because the reality was no-one knew enough about COVID-19.
The hardest was month four, when Freya ended up in hospital from her long COVID symptoms. In a journal entry dated August 24, 2020, she wrote: “Must stay hopeful. Must believe I will get better.” After so many relapses, she had fallen into a depression filled with grief, for her healthy body and her old life.
To this day, we still know very little about long COVID, including just how many people it affects.
Various studies over the past 18 months estimate long COVID can affect anywhere from 2.3 per cent to 76 per cent of COVID-19 cases. It’s important to remember these studies vary in method, with some tracking only hospitalised cases and some relying on self-reported surveys.
A comprehensive study by the University of NSW places the figure at around 5 per cent. Researchers tracked 94 per cent of all COVID-19 cases in NSW from January to May 2020. Of the 3,000 people surveyed, 4.8 per cent still had symptoms after three months.
The uncertainty doesn’t end there. We also have no idea why long COVID hits certain people, but not others. It’s been likened to a kind of “Russian roulette”.
Studies have consistently found long COVID to be more prevalent in women, older people and those with underlying conditions, but there’s evidence to indicate children are capable of developing long COVID too.
Being young and fit is no guarantee you’re safe either, and nor is having a minor initial COVID case. The longer-term symptoms can strike even those who had few initial symptoms.
Those with long COVID report a constellation of symptoms including fatigue, dizziness, shortness of breath, brain fog, memory loss, loss of taste and smell, numbness, muscle spasms and irritable bowels.
One of Australia’s leading researchers in the area, Professor Gail Matthews, says long COVID is likely a spectrum of different pathologies.
Dr Matthews is the Head of Infectious Diseases at St Vincent’s Hospital and Head of the Therapeutic Vaccine and Research Program at the Kirby Institute at UNSW. She says the issue of long COVID will be huge on a global scale and it’s crucial to understand it better.
One theory is that COVID-19 can trigger the immune system to behave in an abnormal way, releasing cytokines that can make you feel unwell with fatigue and other symptoms.
Another is that there could be some elements of the virus — called antigen persistence — somewhere in the body that continues to trigger an ongoing activation in the immune system.
There’s also early evidence that vaccination might help reduce or even prevent long-term symptoms. Freya stopped relapsing around month seven, although her senses of taste and smell still haven’t fully recovered. She says rest was a big part of her recovery.
“Other people, if they don’t have parental support, or they have to work because they’ve got no savings, or they can’t rely on their parents, or they have young kids — I have no idea how they got through it, because it would have been impossible in my eyes,” Freya says.
Judy Li is in an impossible situation. An all-encompassing fatigue has taken hold of her mind and body, stripping away her ability to work, parent or plan for the future.
The 37-year-old got COVID-19 in March 2020 while an inpatient at a Melbourne hospital. She had been struggling after giving birth to her second child and was getting the help she needed.
Despite her anxieties, Judy’s case was very mild and it wasn’t until three months later when her three-year-old brought a bug home from day care that she realised something was wrong.
As day-care bugs so often do, it ripped through the young family. “It felt like I hit a brick wall, I was a lot worse than everyone else,” Judy says.
“It wasn’t the usual symptoms… I was just really lethargic, really fatigued and I remember at about the three-week mark of having those symptoms, that kind of fatigue, I thought, ‘this isn’t right, this is a bit odd.’”
Her fatigue is not like being tired, it’s a different kind of exhaustion, a severe lack of energy that doesn’t replenish after sleep.
“This is like something you feel in your limbs; you feel like they’re really heavy, they’ve got this kind of, I wouldn’t say ouch-kind of pain, but it’s sort of an achiness to your limbs,” she says.
The fatigue comes and goes, but Judy has noticed it can flare up when she gets sick or when she expends herself physically or mentally.
One of the worst episodes came after an eight-hour trip to Canberra for Christmas to visit her in-laws. “I woke up and I was completely paralysed,” Judy says. Distressed, in tears, she could only call out to her partner for help.
“I just did not have the strength to move my limbs and I kept trying and trying and trying and eventually he helped me up. “I sort of dragged my arm up, I could barely hold a glass of water and he’d help me to drink out of it. If I had to go to the toilet, he had to basically carry me.”
This fatigue has derailed Judy’s life because when it sets in, she never knows how long it’s going to last or whether it will go away. It makes work and parenting impossible. Judy’s two young children don’t understand what’s wrong with mum or why she can’t get out of bed.
“When the kids are crying at home, I can’t go and soothe them,” she says.
“This is not a lack of motivation, it’s like I want to get up and I want to go to my children.
“I want to get up, I’ve got work I need to do. I want to get up and even go get something to eat, I’m hungry, but I can’t actually tell my body to move in that way.”
Fatigue or post-exertional malaise is one of the most common symptoms of long COVID, but it’s also a very common symptom in myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a biological disease affecting an estimated 250,000 Australians.
There are striking similarities between long COVID and ME/CFS. Both can cause symptoms such as fatigue, dizziness, memory loss or ‘brain fog’, and irritable bowel, and both are likely to encompass a range of different pathologies.
ME/CFS is usually triggered by a viral infection — ebola, dengue fever, glandular fever, epstein barr, ross river virus, SARS and even the more common influenza have all left trails of chronically ill people in their wake.
Experts have even questioned whether long COVID could be ME/CFS by another name, although the jury is still out on that theory. ME/CFS has been around for decades but we still don’t know much about it.
Australian advocacy groups desperately want to see more research and support to help people with this chronic illness navigate medical, financial and accommodation services. They also say doctors need better education to diagnose and treat the condition early on.
Bronwyn Caldwell knows what it’s like to live with a condition that no-one understands or knows how to treat. She’s lived with ME/CFS for 20 years, ever since a suspected case of glandular fever in her 20s.
The 46-year-old from South Australia is adamant the early advice from her doctor to rest was the reason her condition didn’t immediately worsen. She was able to work part-time as a brewer up until 2013 but a relapse has left her mostly bed-bound.
Bronwyn considers herself lucky — her illness was validated by doctors and family, she doesn’t have cognitive difficulties and isn’t in pain. But her voice begins to break when mentioning that most people with ME/CFS face stigma that they’re being lazy or faking their illness.
“I can’t imagine what it’s really like to have everyone in your life say you’re just being lazy, because the reality is all of us beat ourselves up to that all the time,” she says.
A 2018 study published in the Journal of Health Psychology looking at links between people with chronic illness and suicidal ideation found stigma, misunderstanding and unwarranted advice exacerbates patients’ feelings of overall hopelessness.
Long COVID is creating a cohort of people vulnerable to the same thing, and Judy herself has sometimes wondered whether her family would be better off without her (which, of course, it wouldn’t).
“I honestly go through periods where I wish COVID had killed me instead of just left me with this, this big burden,” she says. With no sick leave left, Judy has had to take unpaid time off work.
It’s a big blow for the high-earning, career-driven project manager who took pride in handling stressful situations and juggling multiple tasks. These days, her mind doesn’t work like it used to.
“It’s just little things like struggling to find the word that I just knew… I would know… sorry… like being able to construct sentences,” she says with an ironic laugh.
“I can try to read something but it just seems like I have to read it over and over and over again. “I frequently walk into a room and can’t remember why, when I would put something down, seriously, two minutes later I have no idea where it is. “I just feel like I’m losing my mind.”
In the COVID-ravaged UK, daily cases peaked at more than 68,000 and daily deaths at more than 1,300. It’s a situation few in Australia — where we have enjoyed long periods of little-to-no community transmission — can fully appreciate.
Adam Attia was living in London through most of 2020 and says it was almost rare if you hadn’t had COVID-19. “I’ve known of people that had given it to their parents and it killed their parents,” the 30-year-old Australian says. “People that we knew on our street had passed away.”
So one day around August, when Adam couldn’t taste the wasabi on his sushi, he immediately knew what was wrong. “I just started to go through the kitchen for things like garlic — I had a whole garlic, I couldn’t taste anything. I ate a lemon like an apple and couldn’t taste a thing.
“I ate ginger like a cannibal, like I ate it with all of the bumps and things on it and couldn’t taste a thing.”
But Adam’s infection was mild and he spent his 10-day isolation staying active. Life went on as normal until three months later, after a trip to Croatia. On the flight back to London, somewhere above Germany, Adam felt an excruciating pain in his stomach. He felt like he was going to vomit, he couldn’t breathe and his head began to spin.
The flight crew didn’t know what to do, contemplating an emergency landing in Berlin while Adam desperately sucked air from a vent they’d given to help him breathe.
The flight managed to land in London and Adam was escorted off the plane. At the hospital, doctors ran tests for internal bleeding and signs of reflux or gastritis but they all turned up empty.
In the weeks and months after that flight, as little as two hours of work would leave Adam shattered and disorientated.
His symptoms are like dominoes. Exhaustion leads to stomach pain, which leads to nausea, faintness and breathlessness.
Adam has learned to manage his symptoms and as soon as he feels the exhaustion creeping in he takes an anti-nausea pill, uses the asthma puffer he now has to carry with him and finds somewhere to lie down.
He ended up moving back to Australia to sort out his health issues, but it wasn’t until a doctor at St George Hospital in Sydney mentioned Adam’s symptoms could be an effect of COVID-19 that he twigged.
“Is it from COVID? Look, I could be shooting in the dark, I don’t actually know,” Adam says. “But what I do know is I didn’t have these [symptoms] before COVID, so I guess it’s more of an educated guess.”
Much about long COVID remains exactly that. More research is needed to really know what’s going on.
The US and UK have allocated billions of dollars into research and set up long COVID clinics to help patients find the right treatment. The Australian government has provided $15 million for research grants into the long-term health effects of COVID-19 and the nation’s vaccination efforts through the Medical Research Future Fund.
As Australia moves beyond lockdowns towards a future where most Australians are vaccinated, borders are open and COVID-19 is actively spreading through communities, this research will be crucial in our understanding of the long-term health issues and the impact on individuals, families, workplaces and the economy.
For now, Dr Matthews says the biggest take-home is that we don’t know who is or isn’t susceptible to long COVID.
“One of the biggest messages is that it’s very hard to know who this will strike.”
Health officials in Victoria have already highlighted the plight of long COVID patients as part of their drive to encourage more people to get vaccinated, as experts say it probably can prevent long COVID.
Dr Matthews says it’s important Australia recognises long COVID as a real issue and makes sure there is appropriate support to help people.
“Even if it’s just an understanding that this condition exists, and recognition that it exists, as opposed to expecting these people to return to full health,” she says.
But until we know more, those like Freya, Judy and Adam won’t have the closure of knowing exactly what’s happened to them.
“It’s hard to wrap your head around,” Judy says, “to say this is potentially a life sentence”. “There’s no defining this is as bad as it gets, you know? “This is just the big mystery question mark.”
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