Better long-COVID awareness, education and support are needed for patients, according to Simon Fraser University researchers who conducted a study on the topic.
More education for health-care workers, including doctors and nurses, is one of the recommendations made in a report done by the SFU-based Pacific Institute on Pathogens, Pandemics and Society.
The report includes findings from two focus groups of unpaid caregivers, professional care providers, long-COVID researchers and people living with long COVID, identified as “longhaulers”.
“It’s an invisible and new condition,” said 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. Unfortunately, that permeates through the healthcare system.”
Long COVID is a multi-systemic condition that can begin weeks after a COVID-19 infection and can last for years, researchers said.
Those living with long COVID often need to take leave from work to rest and manage their symptoms.
According to Statistics Canada, more than 3.5 million Canadian adults have experienced long COVID symptoms, with 40 per cent of those saying they had difficulties accessing health care.
Researchers said despite hundreds of studies into long COVID, there are no standard cures or treatments that have been approved.
“We want to be visible, but we’re increasingly being made invisible. As one unpaid caregiver in our study said, ‘I think there needs to be a cultural shift in terms of people believing that long COVID exists,’” Jamieson said.
Jamieson caught COVID-19 in 2021 and has been dealing with long COVID symptoms ever since.
She was a master’s student at the time and had two jobs. Due to her symptoms, she had to go on medical leave.
“It’s a drastic change,” she said. “The cognitive difficulties … I wasn’t even able to understand my own previous work when I was reading it and the fatigue is disabling. “There are so many triggers, like even reading an email, or socializing and that could just about be enough to leave you bed bound due to post-exertional malaise.”
Along with brain fog and exhaustion, Jamieson’s symptoms included rashes, tinnitus, chest pains, shortness of breath and tremors.
In the report’s conclusion, it found that greater investments need to be made into the public health sector to find evidence-based pathways for care.
“As the pandemic continues, long COVID needs to be imminently addressed at all institutional levels, especially given its potential to be a “mass-disabling event” with resulting socio economic ramifications,” the report said.
“Significant monetary investments need to be made to provide supports, accessible information, and produce research advancing patient rehabilitation.”