What we know — and what we still need to learn — about long COVID

Jonah McGarva has been struggling with long COVID since he was first infected in March 2020.

"It's almost like I can kind of predict how the day is going to go when I wake up in the morning," says the Burnaby resident.  

"I typically know I have a window of about two to four hours after I wake up where I can take a shower, I can eat, I can talk on the phone for maybe a half-hour, or I can answer a couple of emails," says McGarva, the co-founder and director of Long COVID Canada, a patient advocacy group.

"But then I have to go back to bed. I cannot function. And it's not even a question of going to sleep. It's just I can't even sit up straight, like I'm out of breath. I feel like I'm running a marathon while I'm sitting in my office chair."

McGarva, who turns 43 at the end of the month, had no pre-existing medical conditions prior to contracting COVID-19.

Quirks and Quarks19:18What we know about what long COVID is doing to the brain

Early in the epidemic it became clear that some people who had recovered from a COVID-19 infection continued to experience a range of neurological issues, from fatigue, concentration problems and persistent headaches to strange sensory aberrations and psychological disturbances. Today we look into what researchers have learned about just how this respiratory virus is able to have long-term effects on the brain. We speak with researcher and long COVID sufferer Prof. Manali Mukherjee of McMaster University, who’s recruiting for a research study on long COVID, and Dr. Serena Spudich, a professor of neurology and Co-director of the Center for Neuroepidemiology and Clinical Neurological Research at the Yale University School of Medicine who’s research focuses on the neurological impacts of infectious disease.

Nearly two years into the pandemic, researchers are still in the early stages of understanding the scope and impact of long COVID, the informal name of what the World Health Organization calls post-COVID-19 condition.

The WHO says that someone might have long COVID if their symptoms persist for more than three months after infection.

There are roughly 200 symptoms associated with long COVID, including chronic fatigue, persistent cough, cognitive issues with memory and concentration, as well as sleep problems.

Diagnosis can be difficult

Dr. Amy Tan, a family doctor and palliative care physician in Victoria, said it is difficult to diagnose long COVID, given all the unknowns around the condition and limited testing.

"This is what we do as family doctors, we take undifferentiated symptoms that don't have a label and try to label them to best help our patients," Tan said. "One big thing about this that's so concerning, though, is going to be the mass number of people that are now going to perhaps have symptoms and are going to be looking for answers." 

Tan said early research indicates 10 to 25 per cent of all people infected will end up with some sort of long COVID symptoms. But the Omicron surge has not been factored into the research, so it's unclear how many people infected by the variant will deal with long COVID.

Challenges around long-COVID clinics

There are long-COVID clinics set up in the Lower Mainland that help patients through physical and occupational therapy, tips and strategies to manage their symptoms and access to specific medical tests.

But getting into one of these clinics can be challenge. McGarva said his family doctor had to come out of retirement, help him get lung tests, and he still got rejected at his first attempt to get into a clinic. He eventually was accepted to a clinic in Abbotsford. 

An issue for McGarva was that he did not have a required positive PCR test since he became infected early in the pandemic when testing was limited.

B.C.'s Ministry of Health said approximately 4,200 people have been referred to their clinics, and about 66 per cent of them have been accepted.

A primary care provider, like a family doctor or nurse practitioner, is still needed to refer patients, but rules around testing are set to change.

"Starting March 1, 2022, there will no longer be a requirement to provide a positive PCR test in order to be eligible to access post-COVID recovery clinic services," the ministry said in a statement.

Much remains unclear about the long-term impacts of long COVID. 

The University of Victoria has launched research to better understand COVID's long-term impacts on the brain. The Canadian COVID-19 Prospective Cohort Study hopes to take a broad look at how COVID is affecting people's health.

Tan says a greater commitment to research and research funding is needed. 

"This is where the research and academic world directly impacts clinical practice," she said. "We do need investment in research to be able to distil a robust diagnosis list, symptoms list."