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MONTREAL -- There will soon be a light shone on the health challenges of a group of recovering COVID-19 patients in Montreal, known as ‘long-haulers’.
In the next few weeks, a researcher plans to open a post-COVID clinic that will start by seeing a small cohort of patients before ramping up to a larger opening in January, CTV has learned.
The goal is to study the long-term effects of the still novel COVID-19 illness, to better understand the disease itself.
Some scientists and clinicians in other parts of Canada and the U.S. have already set out in this direction, setting up clinics in cities like Vancouver and New York.
The Montreal team is still finalizing its plans but will eventually release more details about how the clinic and study will run, according to someone closely associated with the project.
How will patients be recruited, how many will have access to the clinic and what services will be offered? Those are just a few of the questions some people in COVID-recovery mode are asking, as they hail the news.
“I would love to see a post-COVID clinic set up here in Montreal,” said Jodi Fellner who tested positive for COVID-19 in mid-March and has been plagued by troubling health problems ever since.
The Dollard-des-Ormeaux resident points to daily case numbers in Quebec that have spiralled upwards for a second time, noting every positive test result has a person and story attached.
That number is now up to more than 120,000 people in Quebec so far.
“I don’t have the stats but it seems probably the biggest group has no symptoms or mild symptoms. Then there’s the group that’s hospitalized and unfortunately die of it,” said Fellner.
“Finally there are the people somewhere in the middle who are kind of lost.” A fellow sufferer described them, she said, as “alive, but broken.”
Somehow, 30-year-old paramedic Rachelle Aubichon never imagined it could happen to her.
Athletic and driven, Aubichon was used to bounding up four flights of stairs with all her gear, in full uniform and mask. No problem.
But she was suddenly walloped by fatigue and fever on March 28. When her Urgences-Sante COVID-19 test came back positive, she was floored.
“I knew I was young, I knew I would get through this, but I didn’t know how long this was going to affect me,” she said.
As the illness ran its course, she returned to the same thoughts day after day.
“How’s this going to go?” she thought. "Am I going to be okay?”
Progress is still painfully slow. Seven months in and Aubichon said she only has 80 per cent of her health back and struggles with her stamina.
“When you have COVID-19 you feel like you’re being blocked.”
WHAT ARE LONG-HAULERS?
Fellner and Aubichon are part of an unfortunate and unofficial club with thousands of members around the world. They’ve come to be known as long-haulers because they struggle with symptoms that linger, recur and appear, many weeks and months after the initial phase of the illness.
Many have fallen through the cracks, it appears.
If they weren’t initially sick enough to require hospitalization, they’re left to manage on their own.
In a province like Quebec where healthcare resources are stretched thin wave after wave, long-haulers can feel like they’ve been deserted.
In a social media support group that’s geared towards Canadians, the members also discuss the stress it causes.
Some said they feel stigmatized because not everyone believes their health problems are real or are related to their bout with COVID-19.
One long-hauler even said she didn’t want to be identified because of the stigma associated with how she caught the virus. Lynn (a pseudonym) was infected at a long-term care home in Montreal, where she had a job as a social worker. She said her health authority wouldn’t want that publicized, and she feels like she has to toe the line.
So not surprisingly, there is also much discussion online about the benefits of a COVID-19 recovery clinic, where physical symptoms can be properly evaluated and where mental health concerns aren’t dismissed.
TWO MEDICAL SPECIALISTS WEIGH IN
Even before learning about the Montreal project on tap, an infectious diseases expert said it’s the type of post-COVID model he favours - one that combines patient care with research.
Ideally, researchers would establish a registry, Dr. Karl Weiss said - a database that would collect patient information, allowing doctors to analyze trends in symptoms, establish criteria for diagnosis and treatments and monitor outcomes over time.
“There is an unmet need right now and a research group will probably be the key to first of all understand if it’s a real entity, second of all if it is, how can we make the diagnosis,” said Weiss, chief of the infectious diseases division at the Jewish General Hospital.
“And if we don’t do that, then we’re not offering something that’s scientifically and clinically sound and we’re not helping these people,” he said.
There’s no scientific consensus right now about whether there is a ‘long-haul’ syndrome or a type of chronic COVID-19, according to Weiss, but he said that doesn’t mean they don't exist.
“We have to be very careful - because anything that’s infectious can sometimes give you symptoms for a long period of time, and it’s not necessarily abnormal. Mononucleosis is an example, but we know regular pneumonia, in a regular person with zero underlying medical condition who is in great physical shape can leave some lasting and lingering symptoms for weeks, even for months,” he said.
As someone who has been on the front lines of the pandemic since day one, Weiss knows how challenging a condition COVI19 can be.
“We know the virus has certain characteristics. It creates clots so people end up having what we call thrombosis, and it creates inflammation and we know that it can damage your heart muscle, for example, it can damage certain organs,” he said.
So the virus is not always benign - that much is certain, but there’s a vast scientific puzzle yet to be completed.
The infectious diseases specialist reminds everyone it took scientists 15 years to grasp the basic implications of HIV - and they’re still studying it 40 years later. The SARS-CoV-2 virus is in its infancy.
What makes it all the more confusing is the variability of symptoms sufferers describe.
Cardiologist Lawrence Rudski has seen at least ten patients who identify as long-haulers. Like his colleague Karl Weiss, he thinks well-designed, controlled studies are needed to advance knowledge.
But in the meantime, he said, he still does what he can to figure out what’s wrong.
“When you look at all the other symptoms, the brain fog, the chest pain, the chronic fatigue - their symptoms are real and they want something to be done for the symptoms. I understand it. My frustration is, I can’t fix it,” said Rudski, who is the Jewish General Hospital’s chief of cardiology. “And do I believe that it’s related? I do believe it’s related to COVID... But how do you treat something that you don’t understand?”
Rudski said he begins by validating their symptoms, ruling out anything dangerous.
If heart damage is detected, the cardiologist said, it could be related to COVID-19, but it could also be related to underlying heart disease.
“We know people with COVID get these microthrombi, these little clots in little vessels that can go to the brain, can go anywhere.” They can also go to the lungs.
But Rudski said the phenomenon hasn’t been tested in a formal study, from a cardiology perspective.
One set of symptoms recently began to stand out for Dr. Rudski. A few recent patients who had COVID-19 in the past did turn out to have a weakened heart, inflammation and a little fluid around the heart.
“We call it myocarditis. But is it the virus that’s going to the heart muscle or is it the inflammation that the virus is causing?” More avenues for study.
Often enough though, when tests come up empty, Rudski can only offer practical advice.
“We say, you have chest pain, we don’t know why. This is what you can do. You rest, you eat well, you exercise and that’s mostly what is advised. It’s lifestyle and realistic goals. Start low, go slow, and progress.”
THE UPS AND DOWNS OF LONG-HAULING
“It’s been a roller-coaster,” said Jodi Fellner describing the past seven months.
The Dollard-des-Ormeaux resident tested positive after she went to Florida in March to help her snowbird parents on their trip home.
The couple also contracted the virus. Sadly, her father, in his early 80’s, died several months later of other causes, but Fellner said her parents recovered from COVID-19 with few complaints.
Their 53-year-old daughter didn’t fare quite as well.
“My recovery was much worse than my parents, which was totally shocking,” she said.
The sickness started with nausea, followed by fever lasting 14 days. Fellner experienced such intense fatigue she couldn’t lift her head off the pillow and lost about 8 kgs.
One month later, the fever was gone, but that brought little relief.
“I actually started to feel worse,” she said.
Shortness of breath, fatigue, pressure in her chest and palpitations. It was hard to believe the athletic person she was pre-COVID ever existed.
“I did a physical activity every day, sometimes twice - pilates, working out at a gym, playing tennis,” she said. Five months after her illness, she was still sometimes having trouble walking up the stairs.
Fellner went to see a few doctors including a pulmonologist - and cardiologist, Dr. Rudski. When her test results showed nothing worrisome, she was relieved, but also frustrated there was no obvious explanation.
“It caused high stress, I was feeling crappy, and crying all the time. My kids were trying to help me through,” she said.
Like many others, she joined a social media long-haulers’ group and says she relied on tips from those who had gone to post-COVID clinics in their cities. She also found solace.
Just last week, at least one medical mystery was solved, when Rudski diagnosed Fellner with myocarditis, and pericarditis - inflammation of the sac around the heart.
She said they can’t be sure it’s related to COVID-19. But she had none of the related symptoms before she caught the virus.
Dealing with the virus was no easier for front-line healthcare professional Rachelle Aubichon.
During the worst of her experience with COVID-19, the Montreal paramedic wondered if she’d be stuck with it forever. The 30-year-old was diagnosed on March 28th but continued to test positive ten times, over 47 days.
When the Urgences Sante employee finally tested negative, she felt relieved but it didn’t put an end to the health issues.
“Three months after having COVID I had hair loss for six weeks!” she said.
Being sick during the early part of the first wave when even less was known about the illness also took a toll on Aubichon. Colleagues assumed that her negative test meant she could get right back to work.
No, she had to tell them, “I’m not great. I have anxiety to go back to work next week to do five 12-hour shifts.”
She knew she wasn’t strong enough yet. The 30-year old’s cardio output was still unusually low, she said, and she tired easily.
“So even my colleagues who understand science still didn’t understand COVID. I’m like, 'Guys, it’s not a cold or a flu,” said Aubichon. “I don’t have that same fire.”
The paramedic stood her ground and started back to work slowly.
Her advice: “You have to really listen to your body, be mindful and self-aware."
POST-COVID CLINICS UNDERWAY
Post-COVID clinics already exist in North America. In the United States, the Mount Sinai Health System opened the Center for Post-COVID Care in New York City in May. The multi-disciplinary team helps COVID-19 patients transition after release from the hospital but also attends to those who were never hospitalized but need help recovering.
On this side of the border in Vancouver, post-COVID patients can go to the Post COVID-19 Recovery Clinic at St. Paul’s Hospital. Doctors there have seen about 160 patents so far.
The most common ongoing complaints are fatigue, shortness of breath, exercise limitation, cough, anxiety, depression and “what is often described as brain-fog or just feeling a little slower in thinking than usual,” according to Dr. Chris Ryerson, division head of respiratory medicine at Providence Health Care in Vancouver.
“There was a lot of uncertainty early on in the pandemic regarding what was going to happen to people after they recovered from the acute manifestations of COVID-19,” said Ryerson who
is in charge of the research side of the clinic. “We established these clinics in order to provide care for patients in a standardized manner that would also allow us to quickly learn from this experience.”
British Columbia had a relatively small first wave that allowed the Vancouver recovery clinic’s doctors a “unique opportunity at that stage in the pandemic,” said Ryerson.