For long COVID sufferers, a beacon of hope closes its doors

People who continue to suffer the effects of COVID-19 long after contracting the illness say they're concerned to be losing a major resource in eastern Ontario.

The Ottawa Hospital's outpatient post-COVID rehabilitation program opened in July 2021. According to the hospital, it helped treat more than 160 patients before shutting its doors in May.

Dennis Murphy, who spent nearly two years on the hospital's waitlist, called the closure frustrating. He contracted COVID-19 in June 2023, and has been experiencing lingering symptoms including brain fog and fatigue ever since.

The Kingston, Ont., resident was first referred to The Ottawa Hospital program in August 2023, but was still waiting for treatment when the hospital announced the program was ending.

"This [disease] has had a very serious impact on my life," said Murphy, who recognized others have suffered through worse.

"I've been able to continue working, I'm continually able to enjoy many things, if at a lesser level. That is not the case with a lot of people."

For Murphy, it's been the little things that most people take for granted, like taking his kids to the beach.

"I'm really hoping that I can do that this summer, but I realize that if I choose to, I will probably will not be able to do much the next day," he said.

When CBC visited Murphy's home, he grew tired after gardening for a short time.

"It's difficult psychologically ... when you really want to do something and be out and active. It limits my ability to do things that I like to do," he said.

Susan Whitton was more fortunate. She contracted COVID in January 2023 and was accepted into the rehabilitation program the following January. She said it was invaluable, and she fears for others who won't get the same chance.

"It kind of feels like they've been abandoned. They've been sort of left on their own," she said. "If I caught COVID now and there was no support, there was nowhere to turn, you were trying to solve this on your own — I don't know what people are doing now."

She said she's still recovering, more than two years after first contracting the illness.

"I may look better on the outside, and for my job I pretend that everything is fine and everything is wonderful. But it's not. It's a struggle every day," she said.

In a statement, The Ottawa Hospital said the clinic supported more than 160 patients with long COVID-19 symptoms since its launch. 

"In alignment with other centres across Ontario, The Ottawa Hospital Rehabilitation Centre (TOHRC) made the difficult decision to close the program," the hospital wrote in a statement to CBC.

"Care teams at TOHRC are working to provide alternative resources, including educational materials and peer support options, to help patients continue managing their recovery."

But Murphy questions that decision. He called the program's record "woefully inadequate," given the number of long COVID sufferers who are still seeking treatment.

Ontario's Ministry of Health said in a statement that it released guidelines to diagnose, assess and manage patients with long COVID, and provided a resource page on the illness. It did not point to any similar rehabilitation programs available to patients in eastern Ontario.

In December 2023, Statistics Canada reported that about 3.5 million Canadian adults reported experiencing long-term symptoms from COVID-19, and nearly 80 per cent experienced symptoms lasting six months or more.

Only three provinces have extended funding for long COVID treatment, according to Dr. Angela Cheung, a professor of medicine and a senior physician scientist at the University Health Network, University of Toronto. (Cheung has no connection to The Ottawa Hospital's post-COVID rehabilitation program).

She said there's still much that's unknown about long COVID.

"It's kind of like HIV in the early days. We are making progress, but science does take time," she said. "We do sort of need to give it a little bit more time, so we see results from trials."

For patients in eastern Ontario, that doesn't provide much comfort.

"I don't know what lies ahead for me, and I don't think anybody does," Murphy said. "We're still finding out what COVID does to the body."