A  group of scientists, experts, and advocates are calling for “urgent” action to help the estimated 1.4 million Canadians living with “debilitating” symptoms that linger long after their COVID-19 infections. 

In a media release Thursday, the group’s members said they want the federal government to take the lead in developing and funding “an equitable, national action plan” to address Long COVID. The term describes the range of new, returning, or ongoing symptoms following a COVID infection that persist for 12 weeks or longer after an initial — or a suspected — COVID-19 diagnosis.

Those dealing with prolonged symptoms are often called long-haulers. 

“Canada has been so lackadaisical about their approach to even acknowledging Long COVID as an issue,” Susie Goulding, founder of the 17,600-strong COVID Long-Haulers Support Group Canada, said in an interview Thursday.

“And now, two and a half years into this pandemic, we understand that this is a pretty major issue that needs to be dealt with appropriately.”

Susie Goulding, creator of the 16,700 strong Canadian COVID long haulers support group. Photo: Contributed

Earlier this week, a study released by Statistics Canada and the Public Health Agency of Canada found that 1.4 million Canadian adults (4.6% of the population age 18 and older) had symptoms at least three months after an initial or suspected COVID-19 infection. 

“We believe the number is actually even much higher than this 1.4 million,” Goulding said.

The study is described as offering the first, nationally representative insights on Canadians who experienced long-term symptoms. 

Among the study’s findings, a higher percentage of women (18%) reported prolonged symptoms compared with 11.6% of men. 

Of those whose symptoms lasted three months or more, 72% reported fatigue as the most unresolved symptom, followed by cough (39.3%), shortness of breath (38.5%), and brain fog (32.9%).

“People have been suffering for far too long without any support. All through this pandemic, we were told no Canadian should be left behind,” Goulding said. 

“And long-haulers? We’re most certainly left behind with nothing. No financial help, no mental support, nothing. Families are suffering and children are suffering.”

Goulding said as a member of the group calling for action, she wants the federal government to commit to a national strategy that will implement funding for research and medical interventions to help people. 

She also believes a public messaging campaign about Long COVID is required as many long-haulers continue to face stigma and too many Canadians are unaware of what Long COVID could look like in themselves and their children.

As the number of people living with Long COVID increases, Goulding said demand for help grows. Over the last few days, the number of new people joining her national support group has doubled. 

“So many new people are joining our group that had no idea that Long COVID was even an issue, and this is two and a half years into the pandemic,” she said. 

“This is catastrophic, really, that people have no understanding of Long COVID at this point in time. Long COVID is not going away.”

Goulding stressed that funding to establish Long COVID clinics across Canada is also desperately needed. 

“There’s no continuity that’s happening across the country. Every province is out there for themselves,” Goulding said. “We’re just asking for a national plan so that we aren’t wasting time, so we can do this efficiently and urgently.”

The group’s members are also calling for a national strategy that’s pan-Canadian and patient-centred and that includes a Long COVID definition, collection of essential data, a national network of health practitioners, and  a policy framework.

Research suggests that between 10% to 30% of those infected with the virus suffer from Long COVID. 

“There’s a lot of Canadians who up until this point have just really been left without support,” Goulding said. 

“I think that the financial impact on Canadians is just devastating, and the burden of caregiving is also another aspect that people don’t think about.”

Nova Scotia Senator Dr. Stan Kutcher, a psychiatrist and Dalhousie University professor emeritus, is also lending his voice to the call for action. 

“Canada must act now in a strategic manner to help ease the burden of Long COVID on our healthcare systems, on our economy and on the lives of those who are struggling,” Kutcher said in Thursday’s news release. 

“We need to do the research needed to better understand this disease and to develop the treatments that will ensure that all Canadians have rapid access to high quality care as soon as possible.”

Kutcher also spoke with the Halifax Examiner in June about his concerns and calls for investment in targeted Long COVID research. He pointed to the virus’ impact on organs, including the brain and cardiovascular system.

“If we just look at the brain, which is an area that I know a little bit more than I know some of the others, there’s potential for early dementing illnesses, potential for various neuropsychiatric illnesses,” Kutcher said.

Although data specific to Canada isn’t yet available, the group pointed to US calculations showing the financial burden of long COVID could amount to hundreds of billions of dollars each year.

Yvette d'Entremont

Yvette d’Entremont is a bilingual (English/French) journalist and editor, covering the COVID-19 pandemic and health issues. Twitter @ydentremont

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