'Long COVID' clinics expanding as thousands of British Columbians struggle with symptoms
The number of new COVID-19 infections has dropped from its peak during the third wave, but the medical system is only now ramping up supports and medical treatment for thousands of British Columbians who continue to experience symptoms months after getting sick with the coronavirus.
Four post-COVID recovery clinics are now accepting patients in the Lower Mainland, offering teams of experts including lung specialists, psychologists, rheumatologists and physical therapists to better care for people experiencing the long-lasting effects of an illness that’s still being analyzed and unravelled.
One of the leading doctors involved in treating “long COVID” patients says that while the multi-disciplinary approach may sound expensive, he believes it’ll actually be more cost-effective for the health-care system in the long-term.
“That’s the intention, to save a lot of money because instead of having an individual jump around from one specialist to the next in an uncoordinated way, we’re intending to do it and we’ve put these systems in place so that that care is better coordinated,” said Dr. Chris Carlsten, UBC’s head of respiratory medicine and Post-Covid Recovery Clinic lung specialist.
“People want to feel good, they want to work, they want to be productive, they want to be active … so it’s just a matter of trying to help them do that.”
When the long-hauler clinics were first established last year, they were only taking COVID patients with the most debilitating post-infection symptoms. Since then, they have expanded and continue to grow with more funding; they are now accepting patients with a range of symptoms and severities.
The growing treatment options come as local researchers say it’s time we start changing how we think of the illness and the auto-antibody response that might be leading to the long-term symptoms.
“Initially, we thought of COVID-19 as a respiratory illness, but what we’ve learned is that this is a multi-system disease, affecting multiple organs — from the brain, heart, kidneys and liver to the gastrointestinal tract,” said Dr. Anita Palepu, UBC professor and head of the department of medicine, in a research update.
SIGNIFICANT PERCENTAGE OF PATIENTS HAVE ONGOING SYMPTOMS
A precise definition and estimate of how many British Columbians could be struggling with lasting symptoms from the disease is hard to pinpoint. The symptoms are a topic of considerable debate in the medical community, and even the rough estimate that a third of people who’ve had COVID will have symptoms lasting three months after their initial infections is imprecise at best.
Symptoms can include typical hallmarks of COVID-19 (coughing, tightness in the chest, difficulty breathing), brain fog, fatigue and difficulty concentrating; loss of taste and smell may be lingering effects, but aren’t the focus of the recovery clinics.
A referral from a physician is required for care.
Even with a conservative estimate, some 40,000 British Columbians are likely still experiencing symptoms from their infection months later, with varying impacts on their quality of life. Carlsten points out that the one-third ballpark estimate is for those who’ve had symptoms.
“There’s so many people that are infected that are not symptomatic at all, some of whom don’t even know they were infected,” he said.
Some people who weren’t seriously sick have had their symptoms stick around for a year or more, he added, while others who’ve been hospitalized have made full recoveries, so there’s no clear pattern about who will be grappling with the symptoms long-term.
LIVING WITH LONG COVID
While some who technically have long COVID may see their lingering symptoms as little more than an annoyance, for others, the consequences have been debilitating.
Vancouver resident Katy McLean had been very physically and socially active before catching the virus last September, but the 43 year-old now needs a walker and had to stop working and go on disability support.
"I had what seemed like fatigue and a head cold at the beginning, then lost my sense of smell on day nine," she told CTV News, explaining that while her initial illness improved after a month, she relapsed in the spring and spent three months unable to get out of bed.
“I compare it to a bad hangover when you're just dizzy, you're sick, you're so tired, you can't do anything – you can't think straight,” she said. “You feel foggy and cognitively impaired.”
Describing her illness as like a rollercoaster, McLean says her worst days come with shortness of breath and heart palpitations. She’s also developed chronic fatigue syndrome and Postural Orthostatic Tachycardia Syndrome (POTS), which has turned her feet a purplish colour and prevents her from standing for more than a few minutes, even if she had the energy to stand longer.
“It’s isolating,” said McLean, crediting her live-in partner for supporting her through her illness.
"I could’ve never imagined 10.5 months later I'd still be in this situation with my mobility impaired and on disability, unable to work, unable to socialize."
The Provincial Health Services Authority now has resources for patients and doctors alike to research what medical professionals have been able to learn about the long-term effects of COVID-19.
The impacts of isolation and de facto lockdowns have affected everyone, whether they’ve stifled personal relationships and connections or left people feeling depressed and stressed out. But, Carlsten says mood disorders shouldn’t be confused with the low energy and brain fog so many long-haulers are experiencing.
“It’s not just depression and mood. A lot of the manifestations of COVID couldn’t be explained by that at all,” said the lung specialist, pointing to a CT scan of COVID-ravaged lungs, predominantly white from damage and scarring.
“You can imagine how if your lungs are so affected by that, it’s so easily visible, what that can do to your oxygen levels and when you have oxygen levels that are compromised, it’s not a stretch to think you can’t think clearly,” Carlsten said.
While the PHSA's website indicates the clinics will only treat people with a confirmed COVID diagnosis or positive serology test, the practitioners are more lenient, acknowledging many people may have self-isolated with symptoms without getting tested, particularly when testing was in short supply.
“Admittedly, that has been a difficult question for us, because you can imagine the mountain it opens,” said Carlsten. “We’ve been working with the government to get the resources for that, and more recently they’ve been forthcoming. So, as those resources come, we’ll expand the eligibility and we certainly don’t believe a positive test is the only way to establish that you’ve had COVID.”
McLean is grateful there are more supports and hopes there will be more awareness about a condition that’s misunderstood and often unrecognized by people who haven’t experienced it themselves.
“There's not a lot of attention on this because a lot of us are off into the shadows,” she said. “We're not in the world anymore, we're not participating in socializing or the workforce or anything, we're just at home trying to get better."