`Long-haul' form of COVID-19 leaves high achievers barely able to function
Level of disability among otherwise healthy adults shocks doctor at recovery clinic
Alberta's fledgling COVID -19 recovery clinics are watching the third wave and bracing for their own wave of new patients in two to three months time.
But they're not talking just about older adults with lung scarring or wasted muscles from a long stay in intensive care.
Clinicians and therapists specializing in long-haul COVID say typical patients are 30-year-old to 50-year-old women, otherwise healthy adults who often had mild symptoms during the initial infection. Then they're hit with a viral flare-up with symptoms of neurological damage, brain fog, a racing heart or extreme fatigue similar to chronic fatigue syndrome. And it's not going away.
“It's dramatic,” said Dr. Richard Chan, who sees patients at a new COVID-19 recovery clinic run through the Edmonton North Primary Care Clinic.
“I'm still so shocked. I've been seeing these patients for three months and honestly, in some ways I feel like I wouldn't believe it if I didn't see it,” he said. “I'm continually shocked by the amount of disability some of these people experience. They were high-achieving people, managers and super moms of four or five children, that now can barely function.”
The clinic has been open since February, accepting anyone with symptoms persisting at least 10 weeks after a COVID-19 infection. It's focused on treatment, not just research, and its doctors consult with other specialists to try to avoid further referrals with long waiting lists. It accepts people with either a positive COVID-19 test or presumed positive. It's starting a publicity campaign to get the word out Monday.
Various research efforts have found between 10 per cent and 30 per cent of people who test positive for COVID-19 will have symptoms that last months beyond the initial infection, which would be a minimum of 20,000 people in Alberta. But it's not clear how many people have the severe life-changing symptoms now being seen in these clinics.
Alberta continues to simply list anyone 14 days past a positive test as “recovered.”
Alberta Health says it has no provincewide data, and Alberta Health Services says it's still working on a process to track the disease through its POST-COVID task force response group. It's planning to survey all Albertans who previously tested positive.
“Because it is a collection of very different symptoms the definition remains a challenge,” said James Wood, an Alberta Health Services spokesman.
“I empathize with patients who say it's taking a long time to have a co-ordinated response. Resources still seem scattered, with research-focused academic efforts celebrated but little information on practical steps to define, measure and treat this.”
Chan said he's seen roughly
100 patients at the recovery clinic since February. Many come frustrated, feeling their symptoms were brushed off by other physicians. Others report being stigmatized, that some health therapists refuse to see them because they're worried they might still be contagious.
Another long-haul COVID clinic, run by the Workers Compensation Board, now has 128 referrals. It started in late January. The board says two per cent of the 8,300 people whose COVID-19 cases it accepted have still been unable to work after 60 days.
Physiotherapist Jessica
Demars has been helping longhaul patients at her small Calgary-based respiratory clinic since last summer. Her practice was used to focus on lung disease but shifted in February, months after the second wave. Now 85 per cent of cases are Covid-related and she can no longer see them all individually.
Instead, she partnered with the non-profit Synaptic Neuro Rehab (403-984-4909) to create an eight-week, small group course focused on restoring normal breathing patterns, managing common symptoms, pacing to avoid a relapse and navigating insurance/disability claims. It's online, open to anyone in Alberta and offered free except a small fee for supplies. The course itself is funded by private donations.
Going private let them launch quickly, Demars said. The province has talked about treatment options, “but it's a big machine that moves slowly,” she said. “This needs to get out now. If anyone is looking to donate to the program, we're certainly looking for that.”
Patients are also trying to help each other. Jaymie Firkus and a small group of other long-haulers just launched Longcovidcanada. ca, a referral website to share resources. Firkus picked away at it for four months, resting and working as she could.
Her story is typical in the sense that she was healthy PRE-COVID. She's a 38-year-old educational assistant who got a bad cough in March 2020. Testing wasn't available yet, but her whole family, three children included, got sick with a variety of fevers, nausea and coughs. For her it was annoying but not enough to stop her from running, about five kilometres a day.
That lasted two months, until one day she pushed her body. She went for a 20-kilometre run and four days later crashed. Doctors determined she had encephalitis (that infection spread to her brain) and she was sick with a racing heart, headaches, blisters and terrifying hallucinations — screaming faces, images of death and walls melting — all suffered alone, isolating in her bedroom.
Today she still has extreme fatigue, headaches and a racing heart but at least she also has an official diagnosis, dysautonomia, which basically means a messedup nervous system. She still can't work.
Canada has been slower than other countries to recognize and define the condition, which can make it difficult for patients to file insurance claims and get coverage, Firkus said. Countries such as France, the United Kingdom and the United States each had a forum for patients to testify publicly, followed by official guidelines or at least the promise of guidelines to recognize and treat this.
“It's a very lonely journey. (At times), nobody really believed me that it was happening,” Firkus said. “My life got flipped upside down and no one could help me. I feel like, right now, there's just a lot of scrambling.”