The patients sit in front of their computers and phones, the glow of the screens illuminating their faces as they type questions and share stories about the challenges they’re facing. One woman’s brain fog is so severe she once forgot her own sister’s name. A man describes how difficult it is to do something as basic as walk to the kitchen for a snack. A mother laments the lack of energy and stamina she has to care for her toddlers.
On the other end of the video call is a rotating team of health professionals who are there to provide strategies and guidance, and to be a sounding board for a group of people learning to live with long COVID. It’s part of a virtual outpatient program created and run by Providence Healthcare, a rehabilitation, palliative and long-term care organization that is part of Unity Health Toronto. The program helps connect the vast and growing number of long COVID patients with strategies to assist in managing their often-debilitating symptoms.
Unlike in-person clinics, which typically only accept patients associated with a local doctor or health care system, the Providence long COVID program accepts patients from across Ontario, giving individuals in areas with few or no long COVID resources a place to turn.
The program is getting referrals from all over the province, said Ashley Verduyn, chief and vice-president of medical affairs at Providence Healthcare. “I think that speaks to the demand, but also the lack of supports available in those communities.”
Post-COVID-19 syndrome, or long COVID, can be a devastating diagnosis that robs some people of their ability to work, leave the house or do the most basic daily tasks. It’s a complex disease that clinicians and researchers are only beginning to understand – or even accept as a reality. There are hundreds of symptoms associated with the condition, including difficulty breathing, severe exhaustion and trouble concentrating or remembering. Others may suffer from tremors, ringing in the ears or numbness.
Hundreds of thousands of Canadians are living with long COVID. A Statistics Canada report published last fall estimated that about 1.4 million people who became infected with COVID-19 from January, 2020, to August, 2022, were still experiencing symptoms months later.
The Globe and Mail recently observed a cohort of patients as they took part in Providence Healthcare’s virtual program, which consists of weekly online educational meetings led by members of an interdisciplinary health team. In addition to the education modules, patients are also provided with follow-up care and a tailored rehabilitation plan to help them navigate life with their condition.
Several hundred patients have taken part in the program since it was launched in June, 2021. Dr. Verduyn said the hope is to keep it running and develop closer ties to local health organizations to ensure those hardest hit by COVID, including racialized and other vulnerable groups, have access to it.
Some of the educational sessions focus on strategies to avoid overexertion that can lead to serious exhaustion and other physical setbacks. They are also an opportunity for people with long COVID to connect with one another, sharing stories and experiences that can make them feel less alone.
Dr. Verduyn said this part of the program is important, as many people living with long COVID have faced challenges in getting their condition recognized.
“I think people have felt abandoned throughout COVID, those that are experiencing these long symptoms,” she said. “I think it’s still happening because there’s no treatment or quick fix to these symptoms. There’s even a lot of confusion now around making the diagnosis.”
While there is no cure for long COVID and the science around the condition remains in its early stages, the Providence-run clinic and others like it offer patients important resources, as well as recognition that what they are suffering through is real, something that has become a flashpoint during the pandemic as purveyors of misinformation falsely suggest long COVID is a made-up disease.
“Some early research has shown that a rehabilitative model to addressing long COVID or post-COVID condition has yielded some great impacts,” said Lori Brady, senior clinical program director of seniors health and ambulatory care at Providence Healthcare. “We thought that there was certainly a need and we needed to respond.”