Walking up a single flight of stairs leaves Charlise Bruchet with sore legs. Walking at a brisk pace leaves her out of breath.
But it was while training in Ontario for the Canada Summer Games in competitive sailing months after her initial infection that the Chestermere teen had an inkling of her post-COVID condition.
“I had chest pain. But I went to my doctor and they don’t know, right? So they just thought, ‘Just keep working at it, it’s going to get better,’” Charlise recalls. “But as soon as September hit – the school year, once things were starting to get back to normal – I was crashing.”
“Crashing” is a phenomenon familiar to Hannah Wei, a long COVID patient and co-founder of the Patient-Led Research Collaborative (PLRC), a community of patients researching their condition.
“When you exert beyond your threshold, you fall into this crash, what you call a crash. This condition called post-exertional malaise exists in other post-viral illnesses,” Wei said, who contracted COVID-19 in March 2020, at the beginning of the pandemic.
According to a December 2020 paper by PLRC, fatigue and post-exertional malaise were the first and third most common symptoms reported in a survey of 3,762 long COVID patients, respectively. Sensorimotor symptoms, difficulty focusing or thinking and brain fog round out the top five.
“In class, I couldn’t focus as much or I’d go into a test and I would forget — not even in tests, like the next lesson. I would just forget everything I’ve done the day before,” Charlise said.
“We started noticing symptoms that just wouldn’t go away and in fact, it just got worse,” mother Nina Bruchet said. “That’s when we started to realize that it wasn’t just growing pains or inflammation.
“It’s like she’s in a body that’s lived 100 years, it’s aged so much.”
Being in a body that feels drastically different is a source of frustration for 15-year-old Charlise.
“It’s been really, really frustrating, especially since (getting infected) was something I couldn’t control,” she said. “I was trying to be super careful because we have an elderly aunt who lives with us.”
COVID-19 vaccinations weren’t available for those under 18 when Charlise was infected in April 2021.
Charlise has problems with her heart rate, blood pressure, sore muscles and joints, and can easily become disoriented and dizzy.
She has since received two doses of a COVID-19 vaccine, matching the number of times she suspects she’s caught COVID: once at school and another from an unknown circumstance.
With a March 8 announcement from Alberta’s health minister, she’ll soon be eligible for a booster shot.
Charlise has found a physiotherapist who has taken special interest in long COVID cases. But finding a doctor to help has been another challenge.
“I keep going to a million doctors and no one knows what to do with me, no one knows how to treat me, and I just feel like I keep going somewhere and then come back to square one. I just don’t know what to do or how to treat it. And it’s just been super frustrating because I can’t do anything I love anymore.”
Care for long COVID patients is sparse. There are only a handful of AHS-run clinics in the province: the Peter Lougheed Centre and Rockyview General Hospital in Calgary, and the Kaye Edmonton Clinic.
Alberta Health Services said they are “working to plan clinical supports for the small subset of long COVID patients with severe post-COVID symptoms, and supporting clinicians in various approaches to serve specific groups of patients.”
AHS estimates that one in five Albertans who are infected will go on to having long COVID, but international studies peg the number at between five and 30 per cent.
Families like the Bruchets have found pediatric post-COVID care isn’t yet widely available. And Charlise said she’s seen more and more of her Grade 10 classmates exhibiting and talking about their persistent symptoms more than a month after getting sick.
“I’ve been in classes where my heart rate will be going crazy and then somebody in my class might say, ‘Oh, I’ve had that too.’ Or I have circulation problems — so my legs will turn kind of purple sometimes — and one of the kids was like, ‘Oh my gosh, yeah, my legs sometimes do that and I’m always tired, too,'” Charlise said.
“I think it’s a lot of kids (who) don’t realize what’s going on like I did in the beginning, they don’t realize it’s long COVID.”
“The majority of long COVID patients will be able to self-manage their own symptoms using appropriate resources and tools AHS has developed, along with support from their primary care provider,” an AHS statement to Global News read.
But Wei said clinical services have been a nationwide problem.
Putting the pieces together
A heart rhythm cardiologist by training, Dr. Satish Raj is a Calgary researcher looking into a small set of long COVID symptoms at Calgary’s South Health Clinic.
His clinic is modelled after one at Vanderbilt University that treats patients with “orthostatic intolerance,” as he described them.
Pre-pandemic, Raj’s clinic studied a variety of disorders including people whose heart rate dropped or rapidly increased when standing up, or even fainting, sometimes known as postural tachycardia syndrome (PoTS).
The clinic also saw patients who had heart palpitations or weren’t able to exercise because of heart rate irregularities. Sleep disturbances, fatigue and gut issues also presented in some of the clinic’s patients.
The causes of those disorders are still not well known, but some treatments have been developed.
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Long COVID’s symptoms led doctors around the city to refer their patients to Raj’s clinic, given their similarities to what he was studying.
“We set up a study to try to actually look to see how common orthostatic objective complaints are (among long COVID patients),” Raj said.
“The hope is that by understanding what’s going on, we can apply some of the knowledge that we have from these other disorders to try to help these patients suffering … feel better.”
One example of disorders that some post-COVID and postural orthostatic tachycardia syndrome (PoTS) patients appear to have is a chronically low blood volume.
“One of the approaches is to try to augment the blood volume because we think the tachycardia, the high heart rates that cause the symptoms, are a reflex response to that.”
Raj has recommended patients increase their water and salt intake to get more blood pumping through their body. Another approach has been with Spanx-like compression garments that prevent blood from rushing away from the head when standing up.
It’s a principle used to prevent fighter pilots from blacking out during high-G maneuvers.
Raj said the idea that COVID-19 is a lung infection doesn’t cover the entire scope of organs the coronavirus can affect, such as the inner cell layer around different organs and tissues, including the lungs, as well as blood vessels.
“There’s certainly been reports of increased clotting risk: blood clots to the lung, increased risk of stroke and heart attacks. But (COVID-19) also affects the nerves … there may be some neuropathy affected,” Raj said.
“So there are a lot of things going on that involve multiple systems that are much beyond the lung.”
Of the 40 or so long COVID patients Raj’s clinic has seen since the study opened in January, he doesn’t recall hearing of any who were admitted to the ICU and few were hospitalized.
“They had what we would call mild COVID because they didn’t get to hospital. But that doesn’t mean that they’re not going to have a long-term sequelae,” Raj said.
“And we don’t know what it is, whether it’s an autoimmune phenomenon related to the virus or whether it’s lingering virus.
“What is contributing at this stage, I don’t think is well understood.”
Wei has been able to use her analytical background to join the growing army of researchers looking into post-COVID syndrome and all its aspects.
Once an international support group, PLRC has turned into a research cohort of thousands whose work has been published in medical journals.
“Those of us who are on the team either have research backgrounds or health policy backgrounds or data science analysis backgrounds. So we pooled together our resources and our skills at the time to study our own community,” Wei said.
She said one surprise in the research was the disparity in access to PCR tests.
“This points to a very wide gap of access and downstream consequences in terms of who can access care: there are a lot of COVID services and benefits that are only accepting those who have a PCR positive result.”
But the large cohort her group has access to has helped clarify the syndrome’s definition.
“We’ve been involved with the WHO clinical outcomes group and we have established a clinical definition for long COVID. And in fact, we have medical codes for them that we advocated for, and that’s something that clinicians can now use.”
But Canada lacks post-COVID treatment, when compared to the nearly 70 clinics available across the United Kingdom and the US National Institutes of Health research program called Researching COVID to Enhance Recovery, or RECOVER.
“In fact, our team has helped to kick start and advise on the RECOVER program to this day,” Wei said. “That is a large national project that we don’t see reflected in Canada at all.”
With more severe long COVID patients only being treated at AHS clinics, other professionals are bringing their associated expertise to fill in the gaps. Like Francois Daniel, a certified medical exercise specialist, whose first post-COVID client was in the fall of 2020.
Daniel uses his medical exercise background to help patients with fatigue, strength and movement-related symptoms of long COVID.
“We move throughout our day for anything like getting breakfast ready, going out to do some errands — it’s all movement patterns, and sometimes we need to build some strength and some stamina to help out those things,” Daniel said.
“So, in addition to what individuals might be seeing their family physician for some guidance or pharmacist, or maybe they’ve gone through the long COVID or post-COVID clinics here in the city, this is an additional support to help them out, just to gain some energy and get some patterns established.”
A 15-year background working with people with chronic disease, whose symptoms mirror many found in long COVID, has helped inform his practice.
“Having that exposure to different health conditions has really helped to tailor some things as we go along,” he said.
“One modality or one therapy approach is good, but it’s always better when there’s a combination or integration or a collaborative approach.”
“In most cases in medicine, we end up trying to deal with this symptom or that symptom and try and work the edges, and try and make things a bit better,” Raj said.
But he doesn’t think there will be a silver bullet for treating all long COVID symptoms.
“In dealing with some chronic illnesses for the last 20 years, I haven’t found it yet,” he said. “And so we’ve taken the approach of we’ll try and help the people that we can help with the knowledge we have.
“Is that going to be everyone? No. But if we can help 25, 30, 35 per cent of the people to recover, I think in the greater good that’s still helping to get us to where we need to go.”
This is part two of a three-part series on Long COVID. You can read part one here and part three here.