When Susie Goulding was first diagnosed with the novel coronavirus in March, she said she experienced sinus infections, couldn’t swallow, and that her throat felt like “it was paralyzed.”
After testing negative for the virus, not only was she still enduring lesser versions of the same symptoms, but Goulding said she also developed gastrointestinal issues and heartburn.
Six months later, Goulding told Global News she still suffers from prolonged symptoms. She is one of the many coronavirus survivors that call themselves “long-haulers.”
Feeling isolated and fearful, in June Goulding created COVID Long Haulers Support Group Canada, a Facebook group for long-haulers. Since then, the group has swelled to more than 3,200 members.
Goulding said she was concerned that she, along with other long-haulers she’s connected with through her Facebook group, will be unable to live normal lives once the pandemic ends.
What is a ‘long-hauler’?
Long-haulers are coronavirus patients who still exhibit symptoms weeks or months after the expected recovery time — even after they’ve stopped testing positive for COVID-19.
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The World Health Organization said it can take an average of two to six weeks for a patient to fully recover from the illness, depending on how severe the case is.
But when it comes to the long-term effects of the virus, WHO said there was still “relatively little” known, and that more research was required.
Because COVID-19 is still a newer virus, researchers have only begun to examine possible neurological effects and lasting impacts of COVID-19 in recent months. In the few studies that have been conducted, researchers saw cognitive and physical long-term symptoms.
In one July survey of 1,567 members of an online support group for long-haulers, researchers found that 26.5 per cent of symptoms reported by respondents were painful. While not peer-reviewed, the study provided an in-depth look at the challenges faced by those with lingering symptoms.
“The results of this survey suggest that brain, whole body, joints, eye, and skin symptoms are also frequent-occurring health problems for people recovering from COVID-19,” the study read.
Adrian Owen, a professor at Western University, is spearheading the COVID-19 Brain Study.
Its goal is to survey 50,000 coronavirus patients with long-hauler symptoms to better understand how the virus affects the brain, both directly and indirectly, and why the virus is affecting people in different ways.
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“It’s a mystery to me why people aren’t consistently reporting the same symptoms,” he said. “There is clearly evidence that this is a multi-organ problem.”
He said a majority of the long-term symptoms recorded during the COVID-19 Brain Study so far have been linked to neurological issues, such as decision-making problems, difficulty concentrating and memory issues. Many have also experienced “brain fog,” either feeling confused, disorganized or finding it difficult to say what they’re thinking, he said.
“Often people think of them as involving other parts of the body. But actually, most of these things ultimately are controlled by the brain,” Owen said.
Fatigue and loss of smell, for example, all have to do with the brain, he said. Respiration, too, affects the oxygen flow to the brain. Owen said evidence shows that most people who end up in the ICU hooked up to a ventilator are “never the same again” and nearly all ICU patients are cognitively impaired by the time they’re discharged.
As of Tuesday morning, 132,057 cases of the virus had been detected in Canada and 116,370 people had recovered. If even 10 per cent of those people turn out to be long-haulers, Owen said it could present an “enormous burden” on the country’s health and economic institutions.
“The problem is not right now, because we’re all in the pandemic. Most of us are still locked down, most of us still at home. We’re not trying to get back to normal life,” he said.
“But a year from now, hopefully, we will be. And if a proportion of these people aren’t able to do that, we need to try to understand that as best we can in advance of it being a problem.”
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Trying to get help
Inside the Facebook group, members discuss their lingering symptoms and collect data from doctors, health organizations and research groups with the hope of submitting their findings to officials. They also track COVID-19-related deaths and recoveries.
“We are still living with these symptoms that nobody seems to know about and nobody seems to know when these symptoms are going to end,” Goulding said.
“COVID-19 does not just last for two weeks. … We need some help here and we need the acknowledgment from the government so that people can properly protect themselves.”
In July, Goulding wrote an open letter to Canadian health minister Patty Hajdu, urging the federal government to recognize patients experiencing long-term symptoms and to fund research into how lingering symptoms affect the body.
“We have so many questions and need guidance. ‘Am I still contagious?’ ‘Can I hug my mom?’ ‘Is the damage permanent?’ ‘Am I going to die?’” the letter read.
The office of minister Hajdu was unable to respond to our request for comment in time for publication.
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According to the Public Health Agency of Canada, a patient who has been diagnosed with COVID-19 is no longer considered a “suspect case” once they test negative for the virus.
In a statement to Global News, the agency said recovered cases are not part of the PHAC’s COVID-19 interim national case definition, but it’s up to provinces and territories to develop their own definitions of recovered cases “as part of provincial and territorial guidance on the management of COVID-19 patients who have been instructed to self-isolate at home.”
However, said Goulding long-haulers are not “recovering.”
“Recovering should mean that you’re not living with debilitating symptoms,” she said, adding that a recovered person should be able to function as they had before they contracted the virus.
Instead, many members of the group founded by Goulding said they were still living with a variety of symptoms, including tachycardia, lung and ocular issues, and flu-like symptoms. On top of that, she said enduring the effects of the virus for so long can have profoundly negative health impacts on the body and mind.
“(COVID-19) is a multi-system virus that can hit you at pretty much any part of your body, at any system. It’s a monster of a virus and there are no answers,” she said.
“We’re finding that it’s a much, much larger umbrella of illnesses that this virus is causing and there really are no answers at this point. … If people knew that this was a third bracket, they’d perhaps protect themselves better.”
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