Saskatchewan's long-COVID sufferers say they are on their own

"I have to be patient."

That's the simple answer Matthew Cardinal, 35, gives when asked how he's dealt with long COVID for nearly a year. 

The Regina resident is improving but his symptoms persist: brain fog, shortness of breath and fatigue are among the issues he deals with frequently. 

Cardinal is one of up to an estimated 91,000 people in the province with long COVID, or prolonged symptoms. And he's had to navigate his recovery pretty much on his own.

The Saskatchewan Health Authority (SHA) doesn't have dedicated clinics for long COVID, and the organization didn't respond when asked by CBC News whether there are plans to set some up in the future. 

Other provinces, such as Alberta and Ontario, have dedicated clinics funded by provincial health authorities. 

Cardinal's struggle with long COVID began after he was discharged from the hospital on April 9, 2021. That's when he was told to have a doctor followup with X-rays and to make sure he got his medication.

"There wasn't an order to go to physio," Cardinal said. "There wasn't an order to go to anything at all like that. There wasn't an offer for mental health support. There was nothing."

Tens of thousands could have long COVID  

The SHA said it has no clear estimates of how many people have long COVID in the province.

But, there are a variety of studies from all over the world, that project anywhere from 30 per cent to 70 per cent of those who get COVID-19 develop long-COVID symptoms. 

If those projections are accurate, at least 39,000 to 91,000 people would have some form of long COVID in Saskatchewan, where more than 130,000 people are confirmed to have caught the virus.

Saskatchewan is only counting PCR tests as confirmed cases of COVID-19. The number of people who have had COVID-19 — and as result potential number of people who've developed long COVID symptoms — is much higher, according to the province. 

What we don't know

The problem with treating long COVID is that very little is known about it. 

"We have to figure out what is the clinical face of this disease, what is causing this disease, and then how we can treat that," said Alyson Kelvin, a virologist with the Vaccine and Infectious Disease Organization at the University of Saskatchewan.

"So unfortunately, treatment comes at the end of that and that's why we're a bit behind." 

Long COVID is such a nebulous condition with a variety of symptoms that there's no clear cause, Kelvin said.

Not everyone develops the same symptoms and as a result there are a variety of theories out there.  

"We need to assess each person and what their treatments should be based off of what their clinical symptoms are and what might be causing their own long-COVID disease," she said. 

Muhajarine, an epidemiologist at the University of Saskatchewan, said the understanding of acute COVID-19 has progressed, but very little has been done to understand the scale or scope of long COVID in the province. 

"Now is the time," he said in an interview with CBC News, highlighting the decrease in hospitalizations in Saskatchewan caused by acute COVID-19. 

In other countries like England, research of long COVID is already well underway. 

Muhajarine compared it to painting a picture.

"In Saskatchewan we barely have a spot of paint on the canvas," he said. 

A new study, called Sask Long COVID, was recently launched by researchers at the University of Saskatchewan.

The goal is to solve the information gap by providing scientists and policy-makers with a more accurate picture of long COVID in Saskatchewan. 

It's the first study of its scale in the province, and researchers like Kelvin hope to get hundreds of participants so they can understand what symptoms are most common. 

Going forward

The challenges and problems posed by long COVID haven't gone unacknowledged by the SHA. 

In a statement issued to CBC News earlier this month, the health authority said it has "identified long COVID as a strategic priority and is planning on integrating care for this new disease into primary health care, chronic disease management and consultant care in the coming year." 

Even SHA physicians  are asking for more resources to focus on the problem of long COVID. 

"Long COVID needs more consideration," Dr. Johnmark Opondo, a medical health officer with the SHA, said during a briefing for physicians in Saskatchewan.

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Muhajarine said there will undoubtedly be fallout from the number of people who have long COVID and will need medical treatment. 

It remains to be seen how many people that could be, but after two years of dealing with COVID-19 and more than a 1,000 deaths caused by the disease, the health-care system is already being pushed to its limit, Muhajarine said. 

For Cardinal, the lack of progress is understandable but frustrating.

"I just wish they would make something now, but at the same time, they don't know how to treat it," he said. 

The path back to normal is still ongoing for Cardinal.

He recently returned to work and got the go-ahead to go to a normal gym, rather than one where his workouts are monitored by physicians. He will also see a physiotherapist in order to improve his lung capacity.

However, those decisions are all being made by Cardinal, rather than an expert. 

"Really, there's been no referrals because there's nothing here in Saskatchewan to help us," he said.