More long COVID awareness and education is needed among doctors, nurses, care providers and the public in Canada to reduce stigma around the condition and legitimize the disability, according to a new report from Simon Fraser University.

The recommendation is one of a series identified in a report released by the SFU-based Pacific Institute on Pathogens, Pandemics and Society (PIPPS). The report summarizes the findings of two focus groups of unpaid caregivers, professional care providers, long COVID researchers and people with long COVID (longhaulers) to understand and identify barriers to support, delivery of care and information, and determine future research priorities.

“It’s an invisible and new condition,” says Kayli Jamieson, a longhauler who co-led the focus groups as part of a larger study with Kaylee Byers, an assistant professor in SFU’s Faculty of Health Sciences. “Many people don’t believe that long COVID is real or exists. And unfortunately, that permeates through the healthcare system. Even outside of the medical system, there is a broader societal awareness that is lacking.”

Long COVID is a multi-systemic condition that may begin weeks after a COVID-19 infection and can last for years, often requiring leave from employment to rest and manage symptoms. Statistics Canada found that more than 3.5 million Canadian adults (about one in nine) have experienced long COVID symptoms, with 40 per cent reporting difficulties accessing healthcare. Despite hundreds of studies into the condition, no standard cures or treatments have been approved.