Two COVID-19 ICU survivors are encouraging more people to take part in a recent survey created by VIDO-InterVac to gather more information about long COVID symptoms.
The survey is open to anyone and is available through an app called Ethica, which can be downloaded from Google Play or the iTunes store. It can also be accessed online on a desktop computer.
After entering the app, users are to put in the study number: 1913.
Dr. Alyson Kelvin with VIDO-InterVac said if health-care experts can understand what people are experiencing with long COVID, they may be able to start developing support services and treatments locally.
“If you have long COVID, if you suspect you have long COVID, if you had COVID but fully recovered or if you’ve never had COVID at all, it’s really important that you help us out and take this survey,” Kelvin said.
Kelvin said those who have long COVID are people who experience symptoms after 12 weeks recovering from short term COVID-19.
Symptoms can include shortness of breath, increased fatigue, upset stomach and brain fog.
“These are issues that I think we’re really trying to get a clearer clinical picture (of) to help people who might be having trouble after their COVID-19 disease, but are having trouble being diagnosed and getting therapies,” Kelvin added.
Both Jarrid Linder and Matthew Cardinal have experienced long COVID symptoms and took part in the survey.
They say the more research, the better.
Linder tested positive for COVID-19 in March 2021 and was taken to the hospital where he spent 80 days, 40 in a medically induced coma.
After coming out of the coma, Linder was transferred to Wascana Rehabilitation Centre.
“I had to re-learn how to walk, eat, everything. I lost all my muscles in (my) entire body. It’s pretty scary,” Linder said.
He said he’s a lot stronger than he was at the beginning of his recovery but has still got a long road ahead of him.
Linder spent some time using a wheelchair, a walker and crutches. He can now walk on his own but has nerve damage in both of his feet.
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“My left foot — basically there’s nothing there. I can’t lift it or anything, so I have to wear a special brace to hold it up as I walk.”
Before he went into the hospital with COVID-19, Linder was only taking one medication for acid reflux, now he’s up to 22 different medications.
“It’s not anything I wish upon anybody. It’s definitely a serious thing, long COVID.”
Linder also experiences headaches and dizziness but said the fatigue is likely one of the worst symptoms.
“(I) can do minimal things in a day and then I could be tired for the rest of the day, It’s just a matter of getting up, making my bed, making breakfast. You get tired just from doing things like that.”
Linder still hasn’t been able to return to work where he was responsible for running a mechanic shop.
He’s currently on disability.
“You don’t get paid very much. I had to sell my house and I’m living in my parents basement. That’s how I was able to get out of Wascana too because I needed so much help.”
Linder has a young son who is about to turn three in May.
“He’s just go-go-go, and it’s very tough. I’ve got a lot of help, so that’s nice, but I mean just doing simple things like getting on the floor and playing with your son is something that’s difficult. I can’t do very much of that.
“It really hurts me. I wish I could do everything with him but it’s something that’s just gonna take time.”
Linder was not able to get his vaccine before contracting COVID-19, and admitted he probably would have waited had he not been infected.
“But now that I got it and I can see what COVID really does to people, I would recommend everybody to get vaccinated,” he said.
While he did get sick from each dose of his COVID-19 vaccine and booster, Linder said it was nothing compared to having COVID-19.
“I’m willing to take as many as it takes to try and kick this thing.”
Linder recently took the VIDO-InterVac survey and said it was very thorough.
“If my experience helps one person, it’s obviously worth it. If somebody’s experience helps me, I’m definitely grateful — more than willing to do whatever we have to do to try and beat this thing.”
Matthew Cardinal had COVID-19 and was in ICU around the same time as Linder.
Cardinal said he’s been dealing with long COVID symptoms for 11 months now.
“It’s bizarre. I never would have thought I’d be dealing with this stuff almost a year later,” Cardinal told Global News.
When he was discharged, Cardinal was sent home with an oxygen tank that he relied on for about three weeks.
Cardinal still deals with shortness of breath, fatigue and brain fog.
He’s been attending medically-supervised workouts to build up his stamina and muscles.
“Some days I’m dealing with chronic fatigue and when I’m scheduled to work I really have to push myself and go to work anyway, and some of those days some of my customers say I look a little under the weather.”
While people know he’s had COVID-19, Cardinal said they don’t always realize he’s still dealing with the long-term impact.
Some days are better than others, he added.
“You never know when you’re going to feel awful…it’s hard to explain being chronically fatigued sometimes. Some people, they have it a lot longer. Some people, they’re constantly fatigued for nine months. But mine comes and goes.”
Cardinal completed VIDO-InterVac’s survey and encourages others to do it as well.
“I just feel the more information they have with research, the more they can figure this out in the end. It could be anything from vaccines, it could be treatment, it could be mental health supports — you name it.”
“I don’t know exactly what’s going to come out of this, but it’s important that we speak out and do these surveys and do this research project.”
More information about the study can be found on Sask Long COVID’s website.
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