Kim Clark holds up her hand and apologizes as she pauses to catch her breath while talking through the “extreme pain” in her chest.
“This is a typical day,” she said. “I have pain in my head, pain in my chest.”
Clark, 42, has been trying to find relief from her crippling symptoms of post-acute COVID-19 syndrome — also known as “long COVID” — for almost a year. People suffering from long COVID often refer to themselves as “COVID long-haulers.”
For Clark, the COVID-19 infection that kicked it all off last April was mild compared to the damage in its aftermath.
“I just had some nasal congestion, a cough, a little bit of shortness of breath, but nothing intense like this,” said the former social service worker, who lives in Mississauga, Ont.
Researchers have estimated that about 10 per cent of people who contract COVID-19 develop long-haul symptoms — some believe the number could be as high as 30 per cent — but they still don’t understand why.
As provincial and federal governments focus on urgent pandemic priorities — from prevention and vaccination to caring for acutely ill patients in hospitals — people suffering debilitating symptoms in the aftermath of their COVID-19 infections are being left behind when it comes to pandemic-related planning and spending, some experts say.
For example, Ontario’s recent 2021 budget allocated millions of dollars for COVID-19, but COVID long-haul patients weren’t specifically mentioned.
Some say that without more dedicated resources, many long-haul COVID-19 patients will be left navigating the health care system on their own, seeking care for an array of symptoms — from extreme fatigue to neurological impairment.
Having a dedicated group of health-care providers, from internal medicine specialists to occupational therapists, who see a large numbers of patients with long COVID rather than the existing fragmented system of many specialists seeing occasional COVID long-haulers is the most-effective way to build expertise when so little is known, said Angela Cheung, senior clinician-scientist at the University Health Network in Toronto.
That’s because the more patients they see, the more they’ll start to discover patterns and can share those new discoveries.
“I do think that we need a sort of co-ordinated approach to this across Ontario and [even] better if it can be across the country,” said Cheung, who is also co-lead investigator for the Canadian COVID-19 Prospective Cohort Study (CANCOV), which is looking at one-year outcomes in patients with COVID-19.
Care beyond acute and preventative needed
Currently, even those with a family doctor are sometimes on their own. Clark said that three prospective family doctors turned her away because they said they didn’t know enough about long COVID.
“I think one of the things that the health-care system in general — even before COVID — was not great at was dealing with people after the acute component of their illness,” said Dr. Seema Marwaha, a general internal medicine specialist at Unity Health in Toronto and editor-in-chief of the online forum Healthy Debate.
“We need to create some space for care that is not just acute and not just preventative in public health. We need to understand that there is this proportion of people that are recovering that are going to need help.”
In an emailed response to CBC News, Ontario’s Ministry of Health said hospitals can choose to fund clinics for COVID-19 long-haulers “through their global budgets.”
The ministry said it is aware of hospital-based long-haul COVID programs at the University Health Network and Michael Garron Hospital in Toronto, London Health Sciences Centre, Windsor Regional Hospital and the Niagara Health System.
Similar programs exist in B.C. and Quebec, and a handful of private-sector companies are also offering services, including Lifemark Canada, a chain of physiotherapy and rehabilitation clinics.
But if people don’t have insurance coverage, they must pay out of pocket — something many those who are unable to work because of their symptoms, such as Clark, can’t afford.
Canada has lagged behind some other countries when it comes to setting up government-funded, specialized long-haul COVID clinics. For example, in December, the U.K. announced it had invested 10 million pounds — or $17.3 million Cdn — to open more than 60 specialized clinics across the country.
Diagnostic tests offer few clues
When Sonja Mally, 35, became sick with COVID-19 in March 2020, she didn’t even realize it at first.
“All the scary stuff came quite a while after the initial infection,” said Mally, a Toronto tattoo artist.
Before COVID-19, Mally was physically active. Now, the woman who used to go on 10-hour hikes has spent months painstakingly rehabilitating to be able to walk two kilometres, with rest days in between.
Mally said she has suffered through a slew of “terrifying” symptoms, from racing heartbeat to exhaustion so intense it kept her in bed for five months. But neurological issues have been among the most disturbing.
During a neurological test a few months ago, the artist was confident when the testers said they were going to ask her to draw.
“I thought, ‘Oh, finally, like, this is my element,'” Mally said. “They asked me to draw a clock. And I could not remember how to draw a basic clock. I could not remember where the numbers went on a clock. I could not remember which numbers went on a clock.
“It was mind-blowing.”
Both Clark and Mally have spent most of the past year going from specialist to specialist — including cardiologists, neurologists and rheumatologists — trying to get help for their diverse post-COVID symptoms.
They’ve had a lot of diagnostic tests, but the results haven’t shown anything abnormal. Both have been told they have anxiety.
WATCH | Long-COVID sufferers frustrated by lack of care options:
‘A challenging constellation of symptoms’
“Long COVID is a challenging constellation of symptoms,” said Dr. Nadia Alam, a family physician in Georgetown, Ont., and past president of the Ontario Medical Association.
“When patients come to me with symptoms of fatigue, of decreased stamina, of decreased exercise tolerance … vague symptoms that are found in many, many illnesses, if I don’t know that the patient had COVID-19, long COVID would not even be on my list of possibilities.
“Having seen long COVID in some of my patients, it’s often not even on their list of possibilities — they think something else is going on.”
That’s why it’s critical to not only have specialists studying long COVID but also to make sure they’re on doctors’ radar, Alam said.
“We need to advertise the services offered and the eligibility of patients who should be seen there more broadly,” she said. “I’m a physician with a large network, and I’m struggling to understand where to find resources.”
Study hopes to recruit 2,000 patients
Much of the information Clark and Mally have been able to gather has come from the COVID Long-Haulers Support Group Canada, launched on Facebook last June by Susie Goulding. The group has grown to more than 12,000 members.
The group has provided support they haven’t been able to find from health-care providers, they said.
That doesn’t surprise Marwaha, who also studies patients’ experiences with the health-care system.
“We don’t know how to help these people,” she said. “And sometimes, when we don’t know how to help them, they get bounced around a lot. Sometimes, they’re made to feel like their symptoms are all in their own head.”
Clark and Mally say they hope they’ve found a place that can finally help them. Both have applied to be part of the CANCOV study that Cheung is co-leading.
There are about 900 participants so far, says Cheung. The goal is to recruit 2.000 patients with long-haul COVID from across Canada and provide different types of treatment and rehabilitation in health care centres in Ontario, Quebec, B.C., Alberta, Saskatchewan and Manitoba while collecting data to learn what works to help sufferers get their lives back.
Because there are more Canadians suffering from long COVID than the study can accommodate, Cheung is also advocating for government funding to establish more specialized clinics like those in the U.K.
Establishing that level of care for long-haul COVID patients requires money and resources at the federal and provincial levels, Cheung and Marwaha said, and a public acknowledgment that long-haul COVID is a serious issue.
“It’s not going to disappear when the pandemic settles. And so we better start thinking about it now,” Cheung said.
PHAC monitoring research, federal minister says
In an emailed response to CBC News, a spokesperson for federal Minister of Health Patty Hajdu said there is currently not enough data to determine how common long-lasting health effects of COVID-19 might be.
“The Public Health Agency of Canada is monitoring the latest research in this space,” the statement said.
“While provinces and territories are responsible for the management and delivery of health care services, including the potential rehabilitation and treatment services for people with long-haul COVID, our government is working with them to be there for Canadians.”
The federal ministry of health is also funding studies through the Canadian Institutes of Health Research, the statement said, including the CANCOV study.