When it comes to long COVID, the treatment playbook is constantly evolving

"I haven't picked this up in 6 months." Derek Christie slowly strums a few chords on his guitar.

The 61-year-old musician from Richmond Hill, Ont., nearly died of COVID-19 twice over the last eight months. But survival was only the beginning of a long road back.

Christie is one of the more than 170,000 long-COVID patients across Canada. Like the others, he faced a mystifying array of lingering after-effects, from tinnitus to intense pain throughout parts of his body.

"The cough, the fatigue, the aches and pains, hair loss, occasional insomnia, brain fog, like I'm having now," he said.

Christie is getting help. He's an outpatient at a clinic  offered by the Toronto Rehabilitation Institute, where he's seen — both in person and virtually — by a team of experts.

It is one of approximately 20 such clinics across the country that specifically help patients grappling with a much longer than expected recovery from COVID-19.

At the moment, there's no known cure for long COVID, so doctors are creating their own treatment playbook for those affected by lingering symptoms of the disease.

"We're really able to take evidence-based information that's been studied in other populations, with similar symptoms but from a different virus, a different pathology — stroke, MS, spinal cord injury — and take that research and bring it to our COVID rehab patients," said Dr. Alexandra Rendely, a physiatrist who has been working with Christie.

Long-COVID patients — sometimes called long haulers — are defined as those who have at least one unexplained symptom lasting longer than 12 weeks.

According to studies, long COVID is associated with more than 200 symptoms across 10 organ systems, including the brain, heart, lungs and blood vessels. A large Canadian survey released in June found the top reported long-COVID symptoms included fatigue, shortness of breath, brain fog and muscle and joint pain.

It's been a learning experience for Rendely and her team of physio and occupational therapists. They are trying to figure things out as they go, treating patients who can be fine one day and terrible the next. 

Even if Rendely and the others can't find anything structurally wrong with their patients, it doesn't mean the health concerns are less valid. "I think as physicians we should believe our patients with the symptoms that they're experiencing," she said. 

Doctors working with long-COVID patients are already employing some additional investigational tools, such as the use of a special MRI, which allows doctors to dilate the brain's capillaries and see how slow they respond to stimuli. It may help explain brain fog in some patients.

"We have already learned a few things," said Dr. Angela Cheung, a senior scientist-clinician at the University Health Network in Toronto, which includes the Toronto Rehabilitation Institute. She is also co-lead investigator for the Canadian COVID-19 Prospective Cohort Study (CANCOV), which is looking at the one-year outcomes in patients with COVID-19.