Months and weeks after falling ill, people worldwide are reporting lingering symptoms of COVID-19.
Doctors and researchers believe there are a number of possible explanations as to why the self-described “long haulers” are experiencing these chronic symptoms, but it’s hard to pinpoint the actual reasons.
“The bottom line is this — COVID-19 is not simply a disease of the respiratory tract. It is not another flu virus,” Dr. Iris Gorfinkel, a family physician and vaccine researcher in Toronto, previously told Global News.
“This virus has the potential to infect every organ system in the body, and this may account for these long-term symptoms.”
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Emerging research suggests long-haul COVID-19 symptoms might be more common than we think.
A recent study out of the U.K. suggests about three-quarters of those hospitalized for the virus could become long-haulers. The researchers looked at 110 COVID-19 patients whose illnesses required hospital stays for five days, between March 30 and June 3.
Twelve weeks later, 74 per cent of patients were still experiencing symptoms like breathlessness and excessive fatigue.
However, “the study carefully points out that these people were reporting subjective symptoms. In other words, I ask you how you feel, you tell me how you feel,” said Dr. Gerald Evans, chair of the infectious diseases division at Queen’s University in Kingston, Ont.
“When they looked at objective data, like blood tests and other medical testing, they found very little in the way of abnormalities.”
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Of the 110 patients in the study, 104 had normal basic blood test results, with just 12 per cent showing abnormal X-rays and 10 per cent showing restrictive lung function. That latter figure isn’t surprising, Evans said, since people who have severe COVID-19 and are hospitalized primarily experience lung issues.
What it and other studies leave in question is how, exactly, COVID-19 contributed to these people who have chronic symptoms, Evans said, and whether there’s another cause for those symptoms.
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“Is COVID-19 the problem? Or has COVID-19 just happened to be a coincidence in this particular person’s life?” he said.
“It’s telling us that we’re really going to have to examine and look at these people in the long run — both severe and mild to moderate COVID-19 patients. We don’t really have a good picture right now.”
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The U.K. study has not yet been peer-reviewed or accepted for publication, but the results are comparable to other international studies.
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Similar to the British study, one in Italy found 87 per cent of hospitalized virus patients still had symptoms two months after being released. A survey by a team at the U.S. Centers for Disease Control and Prevention (CDC) found a third of its 292 non-hospitalized respondents had not returned to their normal state of health after two weeks.
The same percentages of patients who reported cough, fatigue or shortness of breath at the time of being tested, “continued to experience these symptoms” weeks later, the CDC report stated, “indicating that COVID-19 can result in prolonged illness even among persons with milder outpatient illness, including young adults.”
The findings are limited and the studies are not definitive. But, given the nearly 140,000 confirmed coronavirus cases in Canada, it could mean there are thousands of long-haulers.
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The likelihood someone might experience long-term symptoms is hard to pin down because that data is not being collective en masse, according to Gorfinkel.
“We don’t actually know how common it is,” she said. “Long-haulers aren’t included in online dashboards that count confirmed cases, hospitalizations, deaths and recoveries. They don’t fall into any one of those categories, so they haven’t been counted so far.”
Tens of thousands of people have taken to social media to share their stories on support groups. Some have started running their own research projects and collecting their own data.
Gorfinkel knows it personally. Her sister, a family physician in the U.S., lost her sense of smell and was diagnosed with COVID-19. Nearly three months out, she had only recovered about 30 per cent of her sense of smell, she said.
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For some, months of illness could turn into permanent issues. Some people suffer achy joints, foggy thinking, a persistent loss of smell and taste, and damage to the heart, lungs, kidneys and brain.
There are two main theories as to why COVID-19 leaves damage even after leaving the body, according to Gorfinkel.
One is that the virus itself is causing direct damage or causing scar tissue to form in the areas it has damaged, she said.
The other is the immune response theory.
“We know that for patients that go into the hospital, the immune system can greatly overreact, causing severe damage,” she said.
“It’s possible that the body creates antibodies that not only react against the virus but against the person’s own tissue. This is called an autoimmune response, and has been described for other viruses as well.”
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Genetics might also play a role, Evans said, adding that it is currently being studied worldwide and in Canada. Queen’s University in Kingston is participating in that research.
Both experts agree that more research and that data collected from individuals experiencing long-term symptoms is needed.
At this point, it might be too soon to adopt “long-haulers” as the label for these experiences, Evan notes.
“We still have to carefully analyze these people,” he said.
“Sometimes I’m referred people who believe they have chronic Lyme disease and when we investigate them fully, we find out, in fact, the symptoms they’re having are caused by a heart problem or caused by something like Lupus. It’s the careful analysis we need to make sure they don’t have another cause for those symptoms.”
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