COVID-19: Long-suffering long-haulers need more services, research to end symptoms, advocate says

B.C. opened its fourth clinic to help patients with long-haul symptoms. There are fewer dedicated services in other provinces, advocates say.

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British Columbia opened its fourth dedicated clinic this month for people who suffer from long-term COVID-19 symptoms, but the help available for patients with these debilitating symptoms varies greatly from province to province.

“It seems like B.C. is actually leading the country in this particular area, in supporting post-COVID. There are other clinics that are going to pop up, but I think B.C. is doing a pretty good job in terms of having a more structured network,” said Dr. Euiseok Kim, medical director of the province’s newest post-COVID-19 recovery clinic, in Abbotsford, 70 km southeast of Vancouver.

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Susie Goulding, an Oakville resident who has had so-called long-COVID for more than a year, said there are few publicly funded clinics in the Toronto area beyond services offered through the University Health Network. She pays to attend a private brain injury clinic to treat her COVID symptoms, which are primarily neurological, such as crippling brain fog. Brain fog can include memory loss, confusion, and difficulty focusing on a task.

“Everything is piecemeal, and each province to its own. There’s no continuity throughout Canada,” said Goulding, who runs the Facebook site COVID Long-Haulers Support Group Canada, which has 13,500 members.

“There’s not much available. There’s one (clinic) in Windsor, there’s one in London, but it becomes all so confusing. You have to hunt them down. …. It’s moving in the right direction, but it’s not going nearly as quickly as it needs to.”

Montreal open its first post-COVID recovery clinic in February, and there are similar services in Sherbrooke and Chicoutimi. There are also clinics in Edmonton and Calgary.

But options are spotty in the rest of the country, Goulding said.

Green MP Elizabeth May and NDP MP Daniel Blaikie presented petitions asking the federal government to recognize long-COVID as a health syndrome and to establish clinics countrywide to address medical, rehab, and employment issues.

May’s petition says 50 to 80 per cent of patients contracting COVID continue to feel sick for months, and that “tens of thousands of Canadians” have serious long-term symptoms that affect their health, jobs and day-to-day life

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Exactly how many Canadians will continue to suffer, and for how long, is not clear. International studies peg the number of COVID patients with lingering sickness at from 10 per cent, nearly one third, to as high as three quarters.

Using a conservative estimate of 10 per cent, more than 14,000 of the 142,700 British Columbians who have been infected with the coronavirus would have persistent symptoms. And yet, the province’s four post-COVID clinics, the first of which opened at Vancouver’s St. Paul’s Hospital last summer, have so far dealt with less than 700 patients in total.

Katy McLean outside St. Paul’s Hospital.
Katy McLean outside St. Paul’s Hospital. Photo by Jason Payne /PNG

Katy McLean, 42, is one of those 700 patients. She’s grateful for the screening tests performed on her at St. Paul’s, and for the doctor specialists and therapists to whom she’s been referred.

But she says many more services are needed, as well as research to figure out how to cure long-COVID.

“I feel like everybody’s doing literally the best that they can right now. But a lot of the things that long-haulers are experiencing, nobody really knows how to treat that. When you’re living through it, you’re just desperate for some kind of relief,” said McLean, who lives in Vancouver.

“Once we get through this acute crisis, we’re going to have a lot of people who are still grappling with the chronic side of the pandemic. So it’s vitally crucial that we do have these COVID care clinics.”

She had acute symptoms for about a month after contracting the virus in September, and then improved just enough to return part-time to her urban planning job last fall. She has not worked, though, since February when she fell ill after contracting shingles, which has been linked to COVID-19 in some medical research.

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Her severe COVID symptoms returned and her health went downhill as she developed other complications. Now she uses a wheelchair to get down the block, sits on a chair in the shower, and doesn’t have the energy to cook meals.

“The level of disability for basic life function is pretty major right now. And I don’t know when I will regain that,” she said. “But I’m hopeful with the amount of research and science that is on right now, that we are going to find reasons and answers and treatments.”

Dr. Euiseok Kim at the Abbotsford hospital.
Dr. Euiseok Kim at the Abbotsford hospital. Photo by Arlen Redekop /PNG

Demand for post-COVID recovery clinics increased in B.C. as COVID case numbers soared this winter and spring. There are now two in Vancouver, and one in each in Surrey and Abbotsford southeast of Vancouver. The latter cities are in the Fraser Health Authority, the hardest hit area of B.C.

Kim’s Abbotsford clinic has been open less than two weeks, but his colleagues who work in the other clinics tell him most patients start to show some signs of improvement after six to nine months.

The most common symptoms among clinic patients are fatigue, brain fog, anxiety and depression. Some people who had severe cases of COVID also suffer organ dysfunction, he said.

“They sound like pretty vague symptoms that we all experienced at times, but these have been quite debilitating and affecting people’s lives,” Kim said.

“Frustration is probably one of the more common feelings that they experience. They also feel somewhat helpless. And that perhaps nobody’s really listening to them.”

lculbert@postmedia.com

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