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Becca Blackwood, seen here outside her home in Montreal on July 15, 2020, has experienced prolonged COVID-19 symptoms after getting infected in March.Christinne Muschi/The Globe and Mail

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More than a month had passed since Becca Blackwood tested positive for COVID-19 and she was back in a Montreal hospital, unable to walk, struggling to talk and near delirious after a night of stabbing chest pains and vomiting.

For weeks beforehand, unexpected symptoms had washed over the 34-year-old filmmaker in waves. As she lay in hospital, a doctor came by and noted that a more recent coronavirus test had come back negative, a predictable result for someone infected in March. By that point, it was early May.

“He wrote ‘COVID resolved’ in my file as I was literally lying there writhing in pain on morphine,” Ms. Blackwood recalled. “So basically, recovered means not dead.”

Another 2½ months have elapsed since that note was scribbled in Ms. Blackwood’s chart and she still hasn’t fully recuperated from the effects of COVID-19, despite being one of the more than 97,000 patients the Public Health Agency of Canada classifies as recovered.

But for Ms. Blackwood and an increasingly outspoken cohort of COVID-19 survivors, who refer to themselves as long-haulers, using the term “recovered” elides the fact that it takes some patients months to get back to normal after a coronavirus infection.

‘There’s no comparison to any other disease’: Four COVID-19 survivors describe their experiences

It’s been six months since COVID-19 came to Canada. Here are some of the lives we’ve lost

The Public Health Agency of Canada takes its recovery statistics from the provinces, which define recovered or resolved coronavirus cases in different ways. Quebec changed its criteria last week, leading to a dramatic rise in cases listed as recovered. But for the most part, if 14 days have passed since a patient began experiencing COVID-19 symptoms or tested positive and she is neither in hospital nor dead, she is deemed recovered.

For public-health officials, the 14-day window is important because it represents the maximum amount of time COVID-19 patients are believed to be infectious.

Still, some patients have flocked to online support groups to swap stories of coronavirus symptoms that wax and wane, but refuse to go away. The eight Canadian COVID-19 long-haulers interviewed for this story, who range from their mid-20s to late middle-age, described numbing fatigue, racing hearts, persistent breathing difficulties, gastrointestinal troubles and brain fog, among other symptoms that linger long after they first fell ill.

It’s too early to say how often the coronavirus causes such a long course of illness, or why the virus ruins the health of some young and middle-aged patients – at least temporarily – while leaving others practically unscathed. The medical consensus remains that the vast majority of patients with mild or moderate cases of COVID-19 recover quickly and completely.

But some doctors and researchers, mindful of the toll that longer-lasting cases of COVID-19 could exact, are racing to understand how the virus is affecting outliers such as Ms. Blackwood.

To take one example, Adrian Owen, a cognitive neuroscience professor at Western University in London, Ont., is leading a global study of the virus’s lasting impact on the brain. As he pointed out, more than 14.5 million people around the world have had confirmed cases of COVID-19.

“Even if only 10 per cent of them have serious knock-on cognitive effects,” Dr. Owen said, “that is a massive societal and economic problem a year from now.”

Steep climb back to health

New York City was just coming off the peak of a disastrous first wave when David Putrino and his colleagues at the city’s Mount Sinai Health System noticed that some of their earliest patients seemed unable to shake off their illness.

Dr. Putrino, the director of rehabilitation innovation at Mount Sinai, and his group were providing virtual care to about 800 COVID-19 patients whose cases were not serious enough to require admission to hospital. A small fraction experienced typical COVID-19 symptoms that lasted far longer than expected.

But another subset, comprising about 5 per cent to 15 per cent of patients, went on to develop new and bizarre symptoms that were not necessarily a carryover from their initial infections. Their median age was 38.

Debilitating exhaustion was the most frequent complaint, Dr. Putrino said. “It’s not, ‘Oh, I’m not as in shape as I used to be. It’s, ‘If I get my heart rate up just a little bit, I pay for it for three days,’ ” he explained. Chest pain, difficulty breathing, brain fog, dizziness and gastrointestinal symptoms, such as vomiting and diarrhea, were common, too.

Dr. Putrino and his colleagues think the coronavirus could be causing a wild overreaction in some patients’ immune systems, triggering a postviral syndrome that throws the autonomic nervous system, which regulates many bodily functions, out of whack.

New York’s Mount Sinai opened a Center for Post-COVID Care in mid-May and the service has since been inundated by patients who fit that description and are looking for help, many of whom had their concerns dismissed by doctors who didn’t believe that COVID-19 could cause such a broad range of long-lasting ailments.

“We were sort of surprised and a little bit disappointed to learn that [support groups] were full of people who had had their lived experiences denied by clinicians,” Dr. Putrino said. “This is a new condition. We’re learning about it every single day. So I’m going to listen to what my patient is telling me as opposed to reading a journal article and assuming that that’s gospel.”

To be fair to those dismissive physicians, SARS-CoV-2 is a virus that has, time and again, flummoxed experts.

COVID-19, the disease the virus causes, was first thought of primarily as a respiratory illness, similar to the original SARS.

But as the number of worldwide infections has ballooned, the virus has been implicated in skin lesions, the loss of taste and smell, heart problems, strokes, brain damage and other side effects, some of which can be traced back to the virus’s ability to infect the endothelial cells that line blood-vessel walls. The virus also appears to trigger an out-of-control immune reaction, known as a cytokine storm, in some patients.

When it comes to patients with mild or moderate illness whose symptoms last longer than the typical two weeks, the medical community is “learning in real time with them,” said Jason Kindrachuk, a University of Manitoba virologist who holds a Canada Research Chair in the molecular pathogenesis of emerging and re-emerging viruses.

“It’s going to take some time because we have to try to figure out what this looks like as a spectrum of illness,” he said. “What are all the different complications and syndromes people are feeling as they go through this longer-term recovery phase? How long do these things last? Are they transient? Or do they last for ages?”

Published papers tackling those questions are rare.

One research letter published in JAMA this month found that of 143 coronavirus patients admitted to an Italian hospital, only 18, or just less than 13 per cent, were free of COVID-19 symptoms 60 days after they fell ill. Thirty-two per cent still had one or two symptoms and 55 per cent still had three or more at the two-month mark.

However, all the patients in the cohort had required hospital care; seven of them had been on invasive ventilation. It’s no surprise that the severely ill might face a long recovery, particularly if they spent time in an intensive-care unit.

Bed rest alone is hard to shake off, said Mark Bayley, medical director of the Toronto Rehabilitation Institute, which is part of the University Health Network. “If we took to our beds for two weeks, it would take us four weeks to get back in the shape we were in,” he said. “That’s just the nature of deconditioning.”

For severely sick COVID-19 patients who suffered lung scarring, small strokes or other brief interruptions in the flow of oxygen to the brain, post-COVID rehabilitation could take a long time. Compounding all that is the possibility of genuine anxiety and other mental-health struggles after a brush with a potentially deadly virus, Dr. Bayley said.

But mildly or moderately ill COVID-19 patients wouldn’t expect to face such a steep climb back to good health. Yet some do.

One study of 545 COVID-19 patients in Atlanta, none of whom were admitted to hospital, found that just under 5 per cent were still sick enough to require a follow-up call from their doctors six weeks after symptoms began. The study was published on a preprint server, meaning it has not yet been peer reviewed.

“This is a very unusual disease in the outpatient setting,” said James O’Keefe, an assistant professor of medicine at Emory University and one of the study’s co-authors. COVID-19 is different from “anything we’ve faced before, like influenza, where the time to recovery is much more predictable and reliable,” he added.

Among those still sick at six weeks, the symptoms reported most often were respiratory, including cough, shortness of breath and chest tightness. Some patients also had fatigue, headaches, gastrointestinal troubles and heart palpitations. The median age in the group was 47.5.

Asthma and chronic lung disease were more common among patients who hadn’t recovered than those who had, but the Atlanta sample was small, with only 26 patients reporting symptoms at six weeks, making it hard to draw conclusions.

On the positive side, 95 per cent of the COVID-19 patients followed by Emory’s virtual outpatient management clinic, which Dr. O’Keefe led, were either well enough at six weeks that they didn’t need a follow-up call, or were excluded from the study for other reasons.

Nick Daneman, head of the division of infectious diseases at Toronto’s Sunnybrook Health Sciences Centre, called it “very reassuring” that most patients with mild and moderate illness recover, as expected, within two weeks.

He is one of the doctors running a virtual follow-up clinic for coronavirus patients at Sunnybrook, the hospital that treated Canada’s first COVID-19 patient. The clinic has started offering a 90-day follow-up visit for patients sickened in the first wave.

“What’s encouraging,” Dr. Daneman said, “is that the majority of people decline that follow-up visit, because they’re feeling back to normal health.”

But that isn’t the case for long-haulers such as Ms. Blackwood.

What are the prolonged symptoms in COVID-19 “long-haulers”?

Ms. Blackwood thinks she may have caught the virus in Brooklyn, where she was living and preparing to open an art studio when, on March 16, Prime Minister Justin Trudeau told Canadians abroad, “it’s time to come home.”

What she knows for certain is that she tested positive in early April at a Montreal hospital, something she didn’t find out until four weeks later because of a mix-up in communicating the results.

Throughout the spring, she experienced a cascade of different symptoms. Shortness of breath. A galloping heartbeat. Numbness in her left arm. Brain fog. Blinding headaches. Deep exhaustion. A loss of taste and smell that made spicy curries taste like gruel.

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Throughout the spring, Becca Blackwood experienced a cascade of different symptoms and is still dealing with the fallout from her infection.Christinne Muschi/The Globe and Mail

Today, Ms. Blackwood is still grappling with the fallout from her infection. She was mostly healthy before, although she suffered a concussion last fall and had been tested for autoimmune disorders, which run in her family. Those tests were negative.

Recently, she has started taking walks and swimming again. “The first time, it was the best feeling in the world because I’ve been swimming since I was a child,” she said. “But I ended up having my heart racing the rest of the night. I had crazy shooting pains and the tremors came back.”

Still, Ms. Blackwood tries to stay positive. She knows she has it better than some other long-haulers because her medical records contain lab-confirmed proof that she had COVID-19.

Susie Goulding, 52, the Oakville, Ont., founder of a Canadian Facebook support group for COVID-19 long-haulers, said the inability of some people to access testing at the beginning of the pandemic has made things doubly difficult.

Early testing policies varied, but in many parts of Canada, patients initially could not get a nasal swab unless they had travelled to a COVID-19 hot zone, worked in health care or were admitted to hospital.

It’s hard enough to convince people that COVID-19 can drag on for months, said Ms. Goulding. She fell ill in March and couldn’t get a nasal swab test until June 2, after Ontario broadened its testing criteria. The test, which is only designed to find active infections, came back negative.

“If you don’t have a paper that says you tested positive, you’re treated as though there’s nothing wrong with you,” she said.

Ms. Goulding is looking to change that. On Monday, she and 127 other long-haulers signed an open letter asking federal Health Minister Patty Hajdu, Canada’s Chief Public Health Officer Theresa Tam and the medical officers of health for every province and territory to commit to research on prolonged symptoms of COVID-19.

The signatories also want the Canadian health care system to do more to help long-haulers regain their health. “Going forward, COVID survivors will need intensive and ongoing mental and physical therapy and some people may never fully recover,” they write. “The virus is still young. We have so much to learn and we need to act fast.”

1. Brain

Physicians at University College London published a study this month that described brain-related complications in 43 COVID-19 patients, including strokes, nerve damage, temporary brain dysfunction and brain inflammation. Researchers are just beginning to unravel how the coronavirus affects the brain and the nervous system, but the virus could be attacking the brain directly or sending the immune system into overdrive, leading to dangerous inflammation.

2. Loss of sense of smell and taste

Now considered two of the cardinal symptoms of COVID-19, anosmia (loss of smell) and ageusia (loss of taste) are sometimes the only symptoms in mild cases. Other viruses can disrupt the ability to smell, but SARS-CoV-2 seems to be different in that it uses a receptor called ACE2 to gain entry to cells, and ACE2 expression is high in cells that are important to the olfactory system. It’s less clear why the coronavirus affects taste, but smelling and tasting are intertwined. In most cases, the symptoms resolve themselves in a few weeks, but some studies have found anosmia and ageusia to persist longer than other symptoms of COVID-19.

3. Heart

Doctors recognized fairly early in the pandemic that COVID-19 seemed, in some cases, to be associated with cardiovascular complications, including heart attacks, inflammation of the heart muscle and abnormal heartbeats. Scans found abnormalities in the hearts of just more than 1,200 COVID-19 patients in a global study published last month in European Heart Journal, including 46 per cent of patients with no pre-existing heart conditions. Like other viruses, the coronavirus can infect and damage the heart’s muscle tissue directly. An overactive immune response – known as a cytokine storm – can also inflame the heart.

4. Vascular system

Another of the deadly side effects associated with the virus is blood clots, and those clots may provide a clue to what’s causing some of the stranger symptoms associated with COVID-19. Researchers have found that SARS-CoV-2 can infect the endothelial cells, which line blood vessels and seem to help ferry the virus into major organs. Endothelial cells play a role in clotting. Major blood clots can cause heart attacks and strokes, which have also been linked to COVID-19.

5. COVID toes

Rashes and COVID toes – bluish-purple lesions that resemble frostbite – are sometimes the only symptoms evident in children or young adults with coronavirus infection. Rashes are common reactions to viral infections. But in the case of COVID-19, micro clots in the tiny blood vessels in the feet are likely playing a role in skin discoloration and lesions.

Amanda Antoine, manager of a medical clinic in a small Ontario town, was forced to self-isolate when she tested positive for the coronavirus. She shares her debilitating COVID-19 symptoms and the impact of her illness on her family and her workplace.

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