Tamsin Shute’s life has changed dramatically since she became sick with COVID-19 last fall.
She used to bike to work, practise yoga and spend weekends going for long hikes with her husband and kids.
Now, the 42-year-old needs a wheelchair just to go for a stroll in her Edmonton neighbourhood. On bad days, snuggling up to read a book with her children isn’t even an option.
“COVID is absolutely not over. It’s been six months since it ripped through my kids’ school and disabled me,” said Shute, who is now plagued by a number of long COVID symptoms, including overwhelming fatigue and cognitive problems, often referred to as brain fog.
As a result, Shute is unable to return to her job as a librarian. She spends most of her time at home, and regular activities, such as visiting in the yard with friends, can leave her in bed recovering for days.
“I don’t think anybody ever would want long COVID. It’s excruciating,” she said.
“It’s been so hard on my kids. I was a fun energetic mama who could do all these things and now … I basically lay in bed, help my kids, lay in bed, help my kids. It’s not much of a life.”
First large Alberta survey
Two years into the pandemic, doctors and researchers continue their effort to unravel the mystery of long COVID.
Alberta Health Services, along with the University of Alberta, is conducting the first large-scale survey on the impacts of long COVID in the province.
“It’s really important because we’re trying to understand the experience of Albertans after COVID.… If we understand that people are experiencing certain problems, then we can plan ahead with our service delivery in health care,” said Dr. Chester Ho, senior medical director of the neurosciences, rehabilitation and vision strategic clinical network with Alberta Health Services.
“The more we learn about this … the better we can prepare our health-care workers to support Albertans.”
The survey includes questions about symptoms ranging from breathlessness and a racing heart to headaches and problems with concentration. It also asks people to rate their mobility, pain levels, ability to carry on activities and work as well as anxiety and depression levels both before and after their COVID illness.
According to Ho, 5,700 Albertans have responded to the survey so far. It’s open to anyone who has had COVID-19 symptoms, whether they’ve tested positive or negative.
And he’s hoping more people will participate, in part, so they can learn how long COVID plays out for people infected with the highly infectious Omicron variant that has swept through the province in recent months.
“So far, we’ve had more people from the first few waves participating. So as we actually continue with this survey, we’re going to get more information from people who have had Omicron and then we can analyze and find [that] out. So far, we don’t quite understand that yet.”
As research continues, demand for treatment in Alberta grows.
The long COVID clinic at the Kaye Edmonton Clinic has gone from offering one half-day every two weeks when it opened to five half-days now, and the number of physicians working there has more than doubled, according to co-director Dr. Grace Lam.
“The long-term complications is something that keeps me and my colleagues up at night,” said Lam, who is a respirologist and assistant professor at the University of Alberta.
Based on recent studies, she estimates anywhere between 10 and 50 per cent of people who’ve had a COVID-19 infection will go on to develop long COVID.
The clinic’s patients are often fairly young, with an average age of 50, according to Lam.
“For them to be down for the count — because of their symptoms, because of their fatigue or their brain fog or their shortness of breath — this is going to have huge societal ramifications.”
And Lam warned against the idea that COVID is over.
“Even patients with mild COVID can go on to get quite severe long COVID,” she said.
“I know that there is this idea that perhaps we’re exiting the pandemic phase and it’s becoming endemic. But seasonal flu does not cause long COVID like this. This is a very unique virus that for some reason is able to continue to persist and cause havoc within the body.… At the end of the day, you still want to avoid getting infected because the risk of getting long COVID is not worth it.”
Other support programs also continue to have an influx of patients.
“Certainly there are still people struggling with long COVID and looking for help,” said Rosie Twomey, a post-doctoral researcher at the University of Calgary and one of the creators of Breathe, a virtual self-management program for people with long COVID.
The program focuses on activity pacing (to help people dealing with profound fatigue often brought on by basic activities), breathing strategies (to help people struggling with shortness of breath) and peer support. The program began in March of 2021, and every session offered fills up.
According to Twomey, the burden of long COVID is not yet fully understood. She hopes research, including Alberta’s long COVID survey, will help shine a light on the illness.
“It’s not receiving the recognition it deserves. It’s very easy to dismiss invisible symptoms,” she said.
“If we have good data, it’s likely there’ll be better recognition, better support for services [and] better funding for people with long COVID.”