When it comes to long-term COVID, the treatment manual is constantly evolving
“I haven’t picked up this for 6 months.” Derek Christie slowly strums some chords on his guitar.
The 61-year-old musician from Richmond Hill, Ont., Has nearly died of COVID-19 twice in the past eight months. But survival was only the start of a long road back.
Christie is one of more than 170,000 patients with long-term COVID in Canada. Like the others, he has faced a mystifying array of lingering sequelae, from tinnitus to severe pain in all parts of his body.
“Cough, fatigue, body aches, hair loss, occasional sleeplessness, brain fog, like I have now,” he said.
Christie gets help. He is outpatient in a clinic offered by the Toronto Rehabilitation Institute, where he is seen – in person and virtually – by a team of experts.
It is one of some 20 such clinics across the country that specifically help patients struggling with much longer-than-expected recovery from COVID-19.
At present, there is no known cure for the longest COVID, so doctors are creating their own treatment manual for those affected by the lingering symptoms of the disease.
“We are really able to take factual information that has been studied in other populations, with similar symptoms but from a different virus, different pathology – stroke, MS, spinal cord injury – and to take this research and bring it to our COVID rehab patients, ”said Dr. Alexandra Rendely, a physiatrist who worked with Christie.
Long-COVID patients – sometimes called long-haul – are defined as those who have at least one unexplained symptom that lasts longer than 12 weeks.
According to studies, long COVID is associated with more than 200 symptoms in 10 organ systems, including the brain, heart, lungs and blood vessels. A big Canadian poll released in June found that the most commonly reported symptoms during COVID were fatigue, shortness of breath, brain fog, and muscle and joint pain.
Learn on the fly
It was a learning experience for Rendely and his team of physiotherapists and occupational therapists. They try to figure things out as they go, treating patients who may be fine one day and terrible the next.
Even though Rendely and the others can’t find anything structurally wrong with their patients, that doesn’t mean the health issues are less valid. “I think that as doctors we should believe our patients with the symptoms they are experiencing,” she said.
Doctors working with long-term COVID patients are already using additional investigative tools, such as the use of a special MRI, which allows doctors to dilate the capillaries in the brain and see how slowly they respond to them. stimuli. This may help explain brain fog in some patients.
“We have already learned a few things,” said Dr. Angela Cheung, senior clinical scientist at the University Health Network in Toronto, which includes the Toronto Rehabilitation Institute. She is also the principal co-investigator of the Canadian COVID-19 Prospective Cohort Study (CANCOV), which examines one-year outcomes in patients with COVID-19.
For example, resting and calming down helps you recover. Deep breathing can also help patients get rid of shortness of breath. Steroid inhalers can be used for wheezing and coughing, as well as steroid nasal sprays for runny nose and sinus congestion.
But doctors still don’t know why COVID-19 persists in some people – and not in others.
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Genetics can play a role, Cheung said. Other theories speculate that the long COVID is a powerful immune response caused by the virus. And there’s the idea that maybe the virus is causing damage to the nervous system and other parts of the body, which is hard to discern.
“Is it the residual viral particles that are not removed that are causing some kind of problem in our system? Is it an inflammatory response? Is it the… endothelial function? It is the lining of the blood vessels,” said Cheung.
At the long-distance COVID rehabilitation clinic at St. Paul’s Hospital in Vancouver, Katy McLean also worked on the debilitating after-effects of her episode of the illness in September 2020.
His recovery has fluctuated, but last February it really took a turn for the worse. Shingles, arthritis, numbness in the legs, headache, vascular dysfunction and a condition known as POTS, or postural orthostatic tachycardia syndrome, which causes, among other things, sweating and extremely fluctuating heart rates.
“I can’t stand for more than a few minutes. I can’t walk more than a few meters. And I use a lot of mobility aids now,” said McLean, 42, who was a healthy woman. and active with an on-time job in an urban planning office when she contracted COVID-19.
The St. Paul’s team of doctors and therapists are part of British Columbia’s post-COVID-19 interdisciplinary clinical care network, which supervises more than 2,600 patients, a number that continues to grow.
Standardization to detect patterns
They are also trying to develop strategies for a disease they have never seen before, according to Dr Adeera Levin, the network’s medical manager.
“Although we understand a little about the biology of the infection, we are not so of course, because we haven’t had 15 years to understand what the real short, medium and long term consequences of infection with this virus are, “she said.
Patients are now required to take a standardized questionnaire every three months, and regular blood tests can help the medical team spot patterns in the cases they see.
This is all a work in progress, said Levin, who will hopefully give doctors clues in regularly updated data. At the same time, she said, “we are trying to learn and create care paths for this group of patients.”
They are aided by the more than 600 global studies recorded to examine the lengthy COVID, though none have yet produced results.
Cheung and his CANCOV partners themselves hope to start a controlled trial in 2022. Known as RECLAIM – which stands for Recovering from COVID-19 Lingering Symptoms Adaptive Integrative Medicine Trial – they will recruit 1,000 patients from across Canada to study the underlying causes of long-COVID and to examine promising therapies.
One such possibility comes from the University of Oxford, where researchers began a phase 2 clinical trial on whether the drug, AXA1125, developed by the US company Axcella Therapeutics, can treat the fatigue and muscle weakness that many long-haul travelers experience.
Another US biotherapeutic company, PureTech, announced a global phase 2 trial last year for its prospect, LYT-100, to treat the long respiratory complications of COVID.
Yet most experts warn that these are only the first few days and that a single therapy might not be possible.
Collaboration as a key
Collaboration is seen by many experts as the key to solving some of the puzzles of the disease. Still, Cheung believes that will only happen if we can get the provinces to share more information.
“I think in general it would be great for even more sharing across the country,” she said. “But because the health system is provincial, everything is done at the provincial level.”
Levin agrees, but in the current excitement of learning more about the disease, she also cautions against prematurely sharing data that could be misleading.
The long mysteries surrounding COVID, its causes, and how symptoms affect so many parts of the body require a more comprehensive assessment from specialists in all fields.
This is already happening in patients with other complex health problems. But according to Levin, the large number of long-term COVID patients means that, over time, this interdisciplinary approach to medicine could become the new normal.
“I think this may be the start of a change in the way we view health care and how best to integrate care and research right now – so that we can actually do the best for the patients, ”she said.
For Derek Christie, his COVID recovery remains his singular goal. He is convinced that he will eventually walk without a walker and return to his two loves: music and volunteering.
During this time, Katy McLean learned, through physiotherapy, to control herself and manage her heart rate, which was essential in controlling her symptoms. She too remains cautiously optimistic.
“It’s unclear whether things will get better or worse or just keep going up and down like a roller coaster,” she said.
For doctors and other medical experts, they expect the sleuth to never stop.
Almost two years ago, they were faced with a symptom spoof that they did not understand. Cheung compared him to 10 blind men smelling an elephant. Now the picture is getting clearer with better tests, which she hopes will soon be available in clinics.
“I hope some of these things become the standard of care. But it takes a little while to get there.”