Vancouver protesters ask for more funding, research into long COVID

Protesters demanding the government provide more funding and treatment for people with long COVID gathered at a demonstration at the Vancouver Art Gallery on Saturday.

Long COVID is a chronic condition that can lead to debilitating symptoms, like brain fog and fatigue, months or even years after an acute COVID-19 infection.

No one knows exactly how many people in B.C. have the condition, but a Statistics Canada report from December 2023 estimated there were 3.5 million Canadians who reported experiencing long-term symptoms following a COVID-19 infection, and around 100,000 had been unable to return to work or school due to long COVID.

More than a dozen people were at Saturday's protest, which marked Long COVID Awareness Day. The protestors said they feel forgotten and left behind as much of the rest of society has moved on from the pandemic — even as they remain unable to get through day-to-day tasks.

A family doctor said funding hasn't been devoted to try and find treatments and diagnostic solutions for the condition, and the protesters want governments to act.

"At the current time, there are no established diagnostic tests and no established treatments for long COVID," Dr. Susan Kuo said. "And our resources for long COVID are very scant."

Kuo, who is a Richmond, B.C.-based family physician, said she gets new patients coming to her every week complaining of long COVID symptoms. According to the World Health Organization, there could be more than 200 different symptoms that affect everyday functioning.

Canada hasn't been doing enough research on the condition, and efforts from the U.S. National Institute of Health are now under jeopardy due to funding cuts from U.S. President Donald Trump, she said.

Kuo noted it took 60 years for people to see the full effect of the 1918 flu pandemic.

"These people with long COVID ... they need help now. We can't wait 60 years."

Nicole Rogers, one of the organizers of Saturday's demonstration, was a teacher for 25 years before she got COVID-19 in March 2020.

She continued to work for months after getting COVID even as her symptoms persisted but, she said, she's been mainly housebound for the last two-and-a-half years.

"Like many sufferers, I've tried numerous supplements, different off-label medications, I've had to seek help in the United States, but there's really nothing," she said.

In B.C., most long COVID patients are referred to a provincewide virtual recovery clinic, which was created after four regional post-COVID clinics were shuttered in February 2023.

"I did attend a long COVID clinic and they discharge you after 18 months whether you've improved or not," Rogers said.

"A lot of the long COVID clinics across the country have either been closed down or are not staffed with physicians to help us."

The protesters plan to send a letter to MPs and MLAs, asking for more research funding, disability support and public awareness of the condition.