B.C. clinics aim to help long-COVID patients get through their day

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Inside a Surrey health care centre, a physiotherapist and a physiologist have created an innovative project to help patients with long COVID get through life while struggling with exhaustion, breathlessness and confusion.

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Their main message? Do the reverse of everyone else.

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“It’s really the opposite of how we live our lives, especially in today’s society. We’re all about achieving and getting something done and being productive,” said Janice Schonewille, a Fraser Health clinical exercise physiologist who specializes in lung rehabilitation.

“And this is about sitting back, taking it easy, being OK with second place. It’s being reasonable about your expectations of yourself.”

Last year, Schonewille and physiotherapist Amy Sangha, who specializes in heart rehabilitation, started seeing patients from Surrey’s long-COVID clinic. They realized these patients were in much worse shape than most other people they see at the Jim Pattison Outpatient Care and Surgery Centre.

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They were asked to create a pilot project specifically for long-COVID patients. But nothing like this was happening in Canada yet, so Sangha took an online course with physios who were pioneering the work in England, New York and California.

When Sangha and Schonewille started teaching breathing exercises, energy conservation and heart-rate tracking in group classes for COVID long-haulers, it was a first for B.C., and has been replicated at the province’s other long-COVID clinics.

The participants “were so happy and thankful to have other people who they could connect with that were experiencing the same thing. These people had felt so isolated up until then,” Sangha said.

It is one example of a service offered to patients in British Columbia grappling with the prolonged and debilitating symptoms of COVID. The province has four long-COVID clinics, in Vancouver, Surrey, Abbotsford and Victoria, run by B.C.’s Post-COVID-19 Interdisciplinary Clinical Care Network.

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There were five clinics, but in September the original one closed at St. Paul’s Hospital, merging with the clinic at Vancouver General Hospital. The two Vancouver locations were not busy enough to keep both open, Dr. Adeera Levin, who leads the network, said by email.

Patients, though, told Postmedia they believe B.C. needs more resources to help people manage their life-altering symptoms, which often leave them unable to work or perform typical daily tasks.

Shane Neville has struggled with lingering symptoms since March 2021. He is grateful for the help he received from physiotherapists and social workers at the Vancouver long-COVID clinic, but says it would be helpful to increase staff to provide “personalized care” to patients often befuddled by brain fog.

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“When you’re in the thick of it with long-COVID — when you’re crashing every day, and you can barely stand up, and you can barely breathe — you don’t need a one-hour information session, you need a one-on-one conversation,” Neville 48, said.

“I get that the medical system is stretched thin … but I think it would make a big, big difference for everyone involved.”

As of the end of October, 7,163 people had been referred by a doctor or nurse practitioner to B.C.’s long-COVID clinics, but only 4,489 of them were deemed “appropriate” referrals, based on criteria such as where they lived and whether they wanted to attend the clinics, Levin’s email said. Of those accepted patients, 3,241 have had at least one in-person or virtual visit, leaving 1,248 still waiting for their first appointment.

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B.C. has had nearly 400,000 COVID cases, but it’s difficult to know how many have had symptoms that lingered for weeks or months. Some recent studies say up to 30 per cent of COVID patients could be long-haulers, while other research has put the estimate closer to five per cent.

That means B.C. could have at least 20,000 people suffering from long-COVID, or many more.

In her email, Levin maintained vaccinations and COVID’s Omicron variant have reduced the number of expected long-COVID cases, and therefore reduced need at the clinics.

Neville had his first visit to the Vancouver General Hospital long-COVID clinic in October 2021, six months after his diagnosis, after lobbying his family doctor and visiting the ER several times. The former BMX racer struggles to breathe, doesn’t have enough energy to read a book, and is unable to return to the video-game-developer job he loves.

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Neville participated in online group workshops, which he found helpful when his brain fog allowed him to process what was being discussed. One session with an occupational therapist has changed how he manages his fatigue, teaching him to evaluate the energy required to accomplish certain tasks and plan his day with realistic goals.

“My anxiety started to drop, I started to be able to assess things a little bit more, and so this class really changed everything,” he said “I really had to change almost every aspect of my life around long-COVID to just get to the point where I could wash myself and feed myself every day.”

Neville, who lives in a three-level townhouse, can now slowly climb the stairs after a physiotherapist suggested stopping on each step to breathe in and out. A doctor at the clinic also diagnosed Neville with POTS, or postural orthostatic tachycardia syndrome, which causes an abnormal heart rate increase after sitting up or standing, which is now under better control since he started taking beta-blocker medication.

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He tries to remain hopeful that he will, one day, be healthy enough to return to work.

“My experience with peers that I’m still in contact with in the long-COVID community is that if you manage your exertion, start to get active and you stay active, then you do eventually improve, but it’s a very, very, very long haul,” said Neville.

He believes, though, this process could be speeded up if the clinics had the resources to provide more tailored help to each long-hauler.

Levin’s email said the network’s goal is to offer “virtual, provincewide care that is accessible to all,” but it’s unlikely any new physical clinics will open.

There are online resources available to patients and the clinics participate in a project in which researchers study long-COVID patients to better understand why symptoms linger for some people, she added.

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Dr. Sharry Kahlon, the medical director of Surrey’s long-COVID clinic, said new patients referred to her clinic start with a phone call about symptoms, which typically leads to an education session about managing those symptoms. Some are offered information workshops run by allied health employees. There could also be followup testing by doctors if there are, for example, concerns about heart or lung problems.

About 40 per cent of patients at her clinic improve after six to nine months. A smaller number of patients remain sick for a year or 18 months, with symptoms such as fatigue, brain fog, post-exertional malaise, and sometimes chronic fatigue syndrome, she said.

The very sick COVID patients who were hospitalized in ICUs do not tend to get prolonged symptoms. Long-haulers are more frequently people who had mild-to-moderate COVID and convalesced at home. The reason for this remains unknown.

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As there is no cure yet for long-COVID, it is hard to say when these folks will improve.

“We just don’t know that yet,” Kahlon said.

Doctors have now started to use medication designed for chronic fatigue syndrome to try to help these patients, but the lack of direct answers is difficult for everyone.

“It’s hard for physicians because we’re used to being able to provide some therapeutic or medical intervention. And it can be frustrating for patients who are looking for an answer, especially ‘when or if I’m going to feel better,’” Kahlon said.

In the meantime, Kahlon believes the long-COVID clinics have been responsive to the changing goalposts of the pandemic.

“What I’ve heard from patients, with what they really found beneficial, is the support: Someone recognizing, validating their symptoms, and then helping them manage them long term.”

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Long-COVID patients continue to support each other through grassroots efforts. The Facebook site COVID Longhaulers Canada has 18,000 members, and the online group Long Covid Canada has 4,000 members, most of them in B.C., said co-founder Jonah McGarva of Burnaby.

McGarva, who has been unable to work in his media job since getting sick in 2020, said he tried through his family doctor to get referred to a long-COVID clinic and on the third attempt was accepted by the Abbotsford location. That felt like an affirmation of his health concerns, and he appreciated the advice and mental health support offered during the group workshops created by Sangha and Schonewille.

But in recent months he’s been in a “dark place,” he said, because his symptoms continue — he had to postpone this interview twice because he was too sick to talk — and there are no concrete medical solutions yet.

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“It is hard to go from living a normal life to having that all end in the blink of an eye,” said McGarva, who maintains hope that things will improve. “I’m hopeful that science is on the right track and there will be some good answers in the next year to two years.”

Sangha and Schonewille have adapted their workshops to include an occupational therapist and a social worker, and they are offered to patients in the Surrey and Abbotsford clinics. The bulk of their patients are women between the ages of 19 and 60.

Their online group sessions run every Wednesday on topics such as breathlessness, fatigue, mental health, brain fog, and returning to work and exercise, and include time for participants to speak with each other and the experts on the call.

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There has been a consistent waiting list for the sessions, Sangha said, because the existing staff can only accommodate a set number of patients.

Although they are working in a field with no cure yet, the two women are buoyed by the fact they are providing some hope to their patients.

“They tell us that we’ve improved their quality of life, that their breathing is better, they’re able to do a little bit more,” Schonewille said.

“Until there is something that says we can cure this, you have to manage it like any other chronic disease. You do the best with what you have to date.”

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