First public survey on Canada’s COVID-19 long-haulers reveals enduring ‘brain fog,’ fatigue

Before Susie Goulding fell ill with COVID-19 in March 2020, her life was full of action.

An avid skier, she often spent winters on the slopes as a volunteer ski patrol. She was also a cyclist, a violinist, gardener and full-time florist.

But contracting the virus changed the Oakville woman’s life forever. What started as a mild sore throat, she said, progressed into digestive and heart issues. By last June, her symptoms became more brain-based, and she began experiencing what’s commonly referred to as “brain fog.”

“Think of an Alzheimer’s patient,” the 53-year-old said. “That’s brain fog.”

For a time, Goulding thought she was alone in her battle with cognitive long-haul COVID symptoms. But a new survey of more than 1,000 Canadians, including those from an online support group Goulding has since started for long-haulers like herself, indicates that enduring brain-based symptoms are common among the majority of those with long-haul effects of the virus.

The survey, which ran May 5-26 and surveyed Canadians from all provinces and territories, found “brain fog,” or cognitive impairment, among the most common symptoms reported by long-haulers. Other frequent symptoms include fatigue and shortness of breath, while others also reported headaches, dizziness and anxiety.

Around 80 per cent of respondents said they experienced their long-haul symptoms for more than three months. But about half of respondents said symptoms lasted 11 months or longer. It is an experience Goulding identifies with, as she still struggles with cognitive impairment more than a year later after contracting the virus.

Goulding said her symptoms affected almost every aspect of daily life, from reading to writing to driving. She described it as “debilitating.”

“You walk into a room and forget what you came in for,” she said. Often in conversation, Goulding will find herself trailing off in thought as she struggles to remember appropriate phrases or words for what she is trying to describe.

“You forget people’s names, information …” she said. “You know, forgetting, having moments where information just doesn’t come automatically anymore … and sometimes it never comes.”

For survey respondents, their long-haul symptoms have been so severe that nearly 70 per cent had to take a leave from work. Many had to cut back on work hours, with 74 per cent of respondents having to reduce their work by half compared to pre-pandemic.

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More than half of respondents — 63 per cent — said they did not have long-term health conditions before contracting COVID-19, and more than 85 per cent of respondents did not receive treatment in hospital during their initial infection.

An overwhelming majority of respondents were also female, with long-haul symptoms appearing to disproportionately impact middle-aged women. Many, like Goulding, received care for their symptoms more than five times since the onset of their illness.

A detailed report of the findings is forthcoming next week, researchers behind the survey said, but initial findings are in line with other studies done on COVID long-haulers outside Canada, which suggests that as vaccinations ramp up and society reopens, those with long-term impacts the virus may feel the effects long after the pandemic is over.

“We’re all trying to bring focus to pivotal information that is being overlooked,” Goulding said, adding that treatment and rehabilitation options for long-haulers are limited and expensive, and research on how the virus is impacting Canadians in the long term is minimal at the moment.

This survey is so far the largest publicly shared data set of its kind that focuses on long-term neurological impacts of the coronavirus in Canada. In the U.S., bipartisan House representatives recently introduced legislation in Congress that would allocate $100 million (U.S.) in funding for research on long-term COVID-19 symptoms.

Dr. Anthony Fauci, director of the U.S. National Institute of Allergy and Infectious Diseases, told the American Medical Association in late 2020 that around 25 per cent to 35 per cent of those who got COVID “have lingering symptoms well beyond what you would expect from any post-viral syndrome like influenza and others.”

The Canadian survey was conducted by Viral Neuro Exploration, a non-profit corporation with a focus on generating research on how viruses can affect the brain, said global director Inez Jabalpurwala. It was done in collaboration with Neurological Health Charities Canada and Goulding’s COVID Long Haulers Support Group Canada.

Goulding hopes the survey is a step in bringing awareness to long-term impacts of the virus that could be affecting more than 400,000 Canadians, and bringing a voice to struggling patients.

“The number one worry is that people are going to forget that we are still suffering, and that life is going to move on,” Goulding said. She added that after months of interdisciplinary rehab, she is slowly recovering, but she worries about others who haven’t had the same access to care.

“It’s really frightening.”

Nadine Yousif is a Toronto-based reporter for the Star covering mental health. Follow her on Twitter: @nadineyousif_

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