Long COVID sufferers from all across Canada are struggling for words, breath and answers after some specialized clinics have shut down.
About 2.1 million adults in Canada, or roughly 7 per cent of the adult population, live with long COVID symptoms, according to a Statistics Canada survey released last month. Common symptoms include persistent fatigue, difficulty concentrating, shortness of breath, and worsening symptoms after exertion.
The survey defined those with long COVID as having symptoms three or more months after a confirmed or suspected COVID-19 infection that could not be explained by anything else.
For one Toronto resident, the lingering effects of long COVID mean he’s no longer able to venture beyond his apartment without bringing an oxygen tank.
“Sometimes I’ll stand up too fast and it is like aging 50 years in the span of a few weeks,” said Marcel, 33. CBC News is not using his last name because he’s concerned the stigma associated with the illness could harm his employment.
Marcel’s long COVID symptoms began more than two years ago. He said he’s been told the lower 20 per cent of both lungs are full of scar tissue.
He had been hoping to begin rehabilitation for his symptoms at a specialty long COVID clinic in Toronto. On Nov. 1, he was placed on a six-month waitlist for the clinic at West Park Healthcare Centre.
But weeks later, he received a letter dated Dec. 8 from West Park saying it had closed its long COVID clinic. Instead, the letter directed him to hospitals hours away or to websites such as one hosted by the World Health Organization.
He is still looking for doctors or programs to help with his recovery, and to help him learn more about how the illness is affecting him.
West Park did not respond to requests for comment from CBC News.
CBC News heard from people across the country diagnosed with long COVID who felt that their symptoms haven’t been fully addressed and that they didn’t have the support they needed to recover.
About 40 per cent of long COVID sufferers who sought health care for their symptoms have had difficulties accessing it, the Statistics Canada survey showed.
“We really are not doing a good enough job, I would say, in supporting people, and we need to do better,” said Kieran Quinn, a clinician scientist at Sinai Health and an assistant professor of medicine at the University of Toronto.
He said current tests cannot explain the lasting symptoms, which he thinks may contribute to the the lack of recognition people with long COVID receive.
Some clinics move to virtual care
In May, Ontario Health Ministry briefing documents obtained by the Canadian Press under a Freedom of Information request said that in 2021-22, the government gave Ontario Health $2.3 million to reimburse expenses for eight hospitals that operated long COVID clinics. For 2022-23, the documents said, no funding commitments had been made.
The Ontario government did not respond to requests from CBC News for an update.
Other provinces are taking different approaches. Quebec lists more than 30 long COVID clinics for specialized care, including some still in the planning stages.
In March 2023, British Columbia ended its two specialized long COVID clinics. It now offers a virtual version from a team that includes nurses, occupational therapists, physiotherapists, social workers and physicians.
“Current data gathered in B.C. and elsewhere continues to show that the majority of people living with long COVID continue to benefit most from self-management tools and strategies,” Dr. Adeera Levin, executive director of B.C.’s post-COVID interdisciplinary clinical care network, said in an email.
“In-person care does not offer a significant benefit or improve long-term outcomes relative to the services offered virtually that are based on the same principles.”
In Toronto, services at the University Health Network’s long COVID clinic include support to individuals experiencing difficulties in areas such as endurance, balance, thinking skills, speech and swallowing.
An interdisciplinary team conducts initial virtual assessments and then visits are offered virtually, with in-person or telephone follow-up sessions available as needed, the clinic’s website says.
However, “due to resource limitations,” the network’s clinic treats only its own patients, the website says — meaning Marcel couldn’t be referred there.
When the immune system ‘goes rogue’
This week, a new study published in Science reported that patients experiencing long COVID showed several changes in proteins in their blood linked to prolonged inflammation. An accompanying commentary says that could potentially lead to a better clinical test.
Specifically, the study showed an increase in proteins associated with immune cells, called neutrophils, that increase during infection.
Immunologist Manali Mukherjee, an assistant professor at McMaster University, noted the latest study has some important limitations: it looked at a relatively small subset of 48 patients, most of them with severe symptoms that landed them in hospital or ICU, which doesn’t represent everyone with long COVID.
But despite that, she said the study has important implications and and its findings reflect ongoing research in her lab and others.
“When neutrophils increase during infection, they go through these certain pathways that can be a double-edged sword,” Mukherjee said. The immune system “can just turn rogue. That’s what this study says.”
When that happens, people can develop autoimmune disorders where their body’s own antibodies start attacking them, she said.
Mukherjee herself experienced long COVID for 18 months and has recovered.
Despite his frustrations, Marcel said that he has also made progress in his recovery, and he hasn’t lost hope that he will continue to improve.
“I like to think that eventually, I will regain some semblance of a normal life,” he said. “My doctor thinks in the fullness of time, I will recover.”