Steve McCauley, who has been affected by COVID-19 symptoms since 2020, at his home in Surrey, B.C., on March 23.Jackie Dives/The Globe and Mail

Alan Katz has been conducting research on the health-care system for 25 years, but for the most part, few members of the public have ever followed the progress of his scientific studies.

That all changed in the past few months, after an announcement that Dr. Katz is starting an ambitious trial to better understand long COVID, including possible risk factors and long-term health effects. Suddenly, people who have been suffering for weeks or months with fatigue, aches, trouble breathing and other debilitating symptoms began contacting Dr. Katz to tell him their stories.

“I’ve never had a research study where I’ve had this much interest from the public, people who have reached out to me, cold calls,” said Dr. Katz, a family physician and senior researcher at the Manitoba Centre for Health Policy. “It’s really quite heartbreaking to hear these stories because these people are desperate.”

As COVID-19 cases and hospitalizations start to wane across much of Canada, more urgent attention is being directed at understanding the origins of long COVID, its risk factors and its treatment. According to the Public Health Agency of Canada (PHAC), long COVID, also known as post-COVID-19 condition, occurs when people experience long-lasting and often debilitating symptoms after an infection with the SARS-CoV-2 virus. There are dozens of symptoms linked to long COVID, including brain fog, exhaustion, shortness of breath, anxiety and depression and aches and pains. In children, among the most commonly reported are fatigue, headaches, weight loss and difficulty thinking or concentrating.

Thousands are afflicted across Canada, but for many people, even getting a diagnosis can be a challenge: The condition is new and much remains unknown. Some doctors say they feel at a loss for how to help patients, as limited treatment options are available.

“I don’t have the answer yet,” said Neeja Bakshi, an internal-medicine physician in Edmonton who recently started a dedicated long-COVID clinic. “I don’t have the magic cure to fix this, but what I’m trying to do is at least, No. 1, listen to patients.”

PHAC is working with agencies such as Statistics Canada to track cases, and with the Canadian Institutes for Health Research (CIHR) to fund studies to better understand the condition. In a statement, a spokesperson for CIHR said it created a dedicated pool of funds for long-COVID research last year and has so far invested nearly $18-million in projects studying various aspects of the condition.

Researchers around the world are also racing to understand long COVID, including at the U.S. National Institutes of Health, which is spending US$470-million on a major study that will track 40,000 patients. And earlier this month, a peer-reviewed study published in the journal Nature found that people who had been infected with the virus experienced a reduction in grey matter and a greater cognitive decline compared with people who had not contracted COVID-19.

For people suffering with symptoms linked to long COVID or other complications of COVID-19 infections, the research can’t be done quickly enough.

“I’m half the person I used to be,” said Steve McCauley, who fell ill with COVID-19 in early 2020 and developed persistent symptoms that have lasted since, including brain fog, exhaustion and a chronic cough. Mr. McCauley used to do custom art installations, a physically demanding job that required him to lift stone, marble and other heavy materials. Now, any prolonged exertion easily exhausts him; if he overdoes it, he has to rest. The condition is taking a toll on all aspects of his life: He and his family recently sold their home in Surrey, B.C., so they can continue to make ends meet.

Mr. McCauley, who is part of the Long Covid Canada support group, one of many online networks where people share stories and advocate for better awareness, said many others with the condition have also had to cut back on work or stop working entirely, and are dealing with major financial challenges as a result. And because understanding of long COVID is still in its infancy, many are facing difficulty getting insurance companies to accept their sickness and disability claims, he added. He found the group through Facebook and said the community has now grown to about 3,000 members.

Slowly, the medical and scientific communities are starting to answer some questions about the syndrome, said Angela Cheung, a professor of medicine at the University of Toronto who holds the KY and Betty Ho Chair in Integrative Medicine. For instance, it can hit anyone who was infected with COVID-19, even if their symptoms were mild. But people who experience five or more symptoms during the acute phase of their illness appear more likely to develop long COVID, she said.

As well, research is showing that the risk of developing the condition appears to be much higher in women, said Dr. Cheung, who is also a senior physician scientist at Toronto’s University Health Network.

Dr. Cheung and her colleagues are working on two large trials focusing on long COVID. One, called the Canadian COVID-19 Prospective Cohort Study, or CANCOV, is following a variety of patients who were infected with COVID-19, including those who were not hospitalized, those who needed a hospital stay and those who were admitted to an intensive care unit. The second, called Recovering from COVID-19 Lingering Symptoms Adaptive Integrative Medicine, or RECLAIM, is looking at treatment options.

There is much still to discover, but Dr. Cheung said they’ve already learned so much, including the fact that long COVID is real and can impact anyone infected with COVID-19.

“Often, people were very active prior to having the illness. … It’s not like they had other issues prior to having long COVID,” she said. “It’s been very debilitating.”

One of the challenges with studying post-COVID-19 condition is trying to understand which symptoms can be attributed to long COVID and which are the result of hospitalization, since a lengthy stay can itself cause a host of physical and mental health problems. Sorting this out is one of the objectives of Dr. Katz’s research. The study will match every positive case of COVID-19 in Manitoba with five individuals of the same sex, socioeconomic status and age range who did not test positive, and will also compare people who were in the ICU as a result of COVID-19 with people who were in the ICU for other reasons. Dr. Katz is hoping the work will shed more light on the symptoms of long COVID and the long-term outcomes of people with the condition overall.

“There are a ton of people who are experiencing symptoms. They don’t know why they’ve got those symptoms and they’re scared,” he said.

The research is also being done to help health professionals prepare for what may be to come.

“We as a health-care system need to plan for what I think is a large number of patients who are going to have these symptoms,” Dr. Katz said. “We currently don’t have the services to meet those needs.”

Dr. Bakshi started her long-COVID clinic in response to an already growing demand. She allots 90 minutes for each appointment so she has time to understand patients’ individual challenges and what realistic goals they can set.

When she started the clinic, Dr. Bakshi had no idea she would soon develop long COVID herself. She caught COVID-19 around the start of the new year and, even though she was vaccinated, had a multitude of severe symptoms. Weeks later, she is still struggling with extreme fatigue and brain fog that has forced her to modify her work schedule.

“It does end up taking me longer to see patients,” Dr. Bakshi said, adding that she can relate to them in a new way.

She has seen about 40 long-COVID patients so far, and of those only a few were unvaccinated when they caught COVID-19. The unvaccinated patients are experiencing much more severe long-COVID symptoms, Dr. Bakshi said. She believes her own case would likely be much worse had she not been vaccinated at the time of infection.

Researchers hope that a better understanding of long COVID will also bring greater awareness to the general public. Dr. Cheung said not enough people consider the risks of post-COVID-19 condition when they weigh the value of vaccines and other protective measures, such as masks.

“The best way to avoid long COVID is to not get COVID,” she said. “It sounds simple, but I don’t think people think about that.”

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