Thirteen months after testing positive for COVID-19, Cam Regier feels worse than ever.
Taking a short walk causes a burning sensation in his chest. Talking too long on a video call leaves him short of breath.
When the Winnipeg mechanical engineer tried to return to the office full time, he could manage only two days a week and needed to nap afterward because his exhaustion was so profound.
"I tried," he says of returning to work. "It was making everything worse, and after those two days, I was really tired."
Like Regier, many long COVID sufferers have found even the smallest exertion can set back their recovery, making it difficult to work, have a family life or plan for the future.
Regier, who is in his late 30s and was relatively active prior to getting infected, doesn’t know what triggered his most recent relapse of serious long COVID symptoms.
"It’s super frustrating," he says. "Because I don’t have an explanation for it, I don’t know what to avoid."
But he knows many Manitobans are going through the same thing.
"Once I started speaking about it more on Twitter and with people I knew, I started to discover more and more people who were still having these lingering symptoms," he says.
Long-haulers in Manitoba need a road map to help them find the best information and navigate the health-care system, Regier says.
"I know no one has the specific answers, but even just acknowledging that this is a condition that actually a lot of people could be affected by — we just sort of ripped off all the protections and said, ‘Let’s get back to it!’ and there’s a lot of people who are not going to be able to get back to it. And they’re going to be wondering what they’re supposed to do."
The province currently has no way of tracking how many Manitobans have been diagnosed with long COVID.
Shared Health is working on a web page for long haulers, which is in the "final stages of development," a spokesperson said Friday. It’s set to include self-management strategies and information so Manitobans can determine when they need to see a health-care provider.
A Manitoba long COVID working group was announced earlier this year and was expected to have specialists establish resources for long COVID patients.
The second session of a Winnipeg Regional Health Authority long haul COVID-19 clinic is set to begin next month. The pilot session ended in March with about 30 participants. Dates for the upcoming session haven’t been announced yet, but the WRHA plans to advertise them in its program guide, a spokesperson stated: https://wrha.mb.ca/groups
The potentially wide-ranging impact of long COVID was not properly taken into account when Manitoba and other jurisdictions lifted public-health orders and told the public to learn to live with the virus, says University of Manitoba research associate Julie Lajoie. Lajoie holds a PhD in virology and immunology, and is experiencing lasting symptoms of the virus herself.
"The headaches I’m having are impairing my work," she says. "I cannot work a full day."
Lajoie was first infected with COVID in early March after her child contracted it at daycare. She was infected again in April.
Lajoie is still dealing with symptoms and had to see her family doctor for treatment of sinus and ear infections. She’s lucky, she says, that her doctor took her lasting symptoms seriously.
"But I know some Manitobans don’t have that help or don’t have a family doctor," Lajoie says. "So that’s really an issue, and we don’t necessarily talk about what it is (to have) long COVID."
Lajoie advises people to photograph and date their positive rapid tests so they have proof they contracted the virus if they need to seek support for long COVID symptoms.
When it enacted public-health protections, the province only considered how COVID-19 hospitalizations would burden the health-care system, Lajoie says.
"The impact of long COVID is not taken into consideration, otherwise we would say that (to) live with the virus means infection and re-infection, like it is right now," she says. "Living with the virus should (mean) let’s continue to be careful, let’s keep the mask mandate, let’s improve vaccination."
There has been a long COVID communication failure in Canada, suggests Heidi Tworek, a University of British Columbia public-policy professor who has compared different countries’ communications approaches throughout the pandemic.
"On a most basic level, there seem to be long-term effects from this disease, and that is not the way that this is being presented. It’s very much framed as hospitalizations and deaths," Tworek says, explaining governments could do more to explain the risks of ending up with long-term symptoms, even after mild infections.
"It remains a bit of a puzzle for me that I haven’t untangled; as to why we don’t have any communication around this issue."
Regier is hoping to receive a referral from his doctor to participate in the next WRHA long COVID clinic.
Calling for more support for Manitobans with long COVID has meant admitting he’s still not well.
"If my employer was not flexible with this, I would probably be on disability because I would not be able to push through it," Regier says, acknowledging people with disabilities and chronic illness have long been fighting the same battle.
Although there’s still much to learn about long COVID, the benefits of wearing masks and improving ventilation are well-known, Regier says.
"We’re not at the end of the pandemic, and we have tools that we’re not using (that could) make all of our daily lives more sustainable. This isn’t a sustainable position, to be infecting thousands of people every week and 10 per cent of them might get long COVID, let alone deaths and hospitalizations and all the impacts on health-care," he says. "There’s also a long-term cost here."
with files from Dylan Robertson
Katie May is a general-assignment reporter for the Free Press.