MONTREAL -- After nine long months of planning, an infectious diseases specialist is finally launching the city’s first post-COVID 19 clinic at the Montreal Clinical Research Institute (IRCM), with patients already scheduled for appointments this Friday.
“I’m tremendously grateful that it’s seeing the light of day and I’m excited to see these patients, to hear their stories and to start to get some answers,” clinic director Dr. Emilia Liana Falcone told CTV news in an interview.
Montreal’s post-COVID project has a dual mission: to provide patient care and to support research that Falcone hopes will one day help doctors evaluate, treat and better understand the full impact of the disease.
To ensure a safe, distanced experience during the second wave, the clinic has taken over the roomy lobby of the institute located at the corner of Pine Avenue and Saint-Urbain streets.
The project is funded by the province and the IRCM, which is affiliated with Universite de Montreal, and where Dr. Falcone is a researcher when she’s not working at CHUM on the pandemic’s front line.
A shift in focus from acute care to follow-up care and research is a necessary move, according to Falcone, who adds that she won't lack for patients.
Among the more than 290,000 people described by the health ministry as having “recovered'' from COVID-19, are a significant number who are now known as long-haulers, who continue to display sometimes debilitating symptoms for many weeks or months after being infected.
“We’re in the process of determining what’s going on in Quebec,” but based on what’s being seen in other countries, “I wouldn't be surprised if even 70 per cent of patients post-infection are having symptoms, probably three to six months out, maybe up to a year,” said Dr. Falcone.
Help is available if you live in cities like Vancouver and Toronto where post-COVIDclinics were set up months ago, and there’s now a clinic open in Quebec’s Eastern Townships at Hotel Dieu in Sherbrooke.
But patients in Montreal, the province’s hardest hit city, have been left in the lurch, frustrated and frightened.
“I’ve absolutely heard these stories,” said Dr. Falcone. “It’s everyone, it’s friends of friends, it’s health care professionals and I truly feel for them.”
The specialist said she didn’t want to see the symptoms become a version of a chronic fatigue syndrome, that can’t be attributed to a real cause, as “these patients could fall through the cracks, be ignored or end up being told it’s all in their head,” said Falcone.
So the infectious diseases expert kept pushing her idea up the hill, inspired by what she learned from her former mentor and boss Dr. Antony Fauci, who she worked for at the National Institutes of Health in the United States for nine years.
Fauci, now a household name, impressed Falcone then as a scientist and a clinician because “he teaches you to keep an open mind and to not leave any stone unturned,” she said.
WHO IS ELIGIBLE FOR THE POST-COVID CLINIC?
This section is being updated, as the clinic makes information available to us, about ongoing decisions regarding clinic protocol.
After a few days of uncertainty and in-house discussions, the IRCM post-COVID-19 clinic has now established more fixed criteria for eligibility - although they don’t rule out some tweaks in the future, clinic director Dr. Emilia Falcone confirmed to CTV News in an email Friday night.
The admission rules will come as a relief to some but will be frustrating for other long-haulers who will still - at least in the short-term be inadmissible, and say they have nowhere to turn for help.
On the up-side, the clinic is expanding the study "to include individuals up to 1-year post-COVID-19 infection,” from the start of their symptoms or the date of a positive PCR test, said Falcone.
This represents a change to the original study proposal that would have only included patients up to six months post-COVID, due to limited funding. The proposal to expand eligibility "should be approved next week,” Falcone said.
To be included in the study, patients must be between 18-90 years old, live in Quebec, be able to travel to the IRCM and CHUM for evaluation and testing and be able to communicate in French or English as there are questionnaires to complete.
Importantly, Falcone says, people "must have a positive COVID-19 diagnosis.”
That can be confirmed in two ways:
- by a positive PCR test result
- based on living with a confirmed COVID-19 positive case, and developing symptoms consistent with the disease within days of the household member being diagnosed
People who are accepted will need to be 28 days to one year past their infection, as of the week of February 15.
If neither of the two diagnostic measures listed above is accessible, a patient could present positive serology (antibody test results) obtained from their doctor, to get into the research clinic.
"However, we do not currently have the funds or resources to screen all patients without a PCR for eligibility using a serological test. I am hoping that as the clinic and our funding evolves, this will change,” Falcone explained in an email after the last round of decisions about the clinic was finalized.
The infectious diseases specialist said right now they can’t enrol patients “who were told they have COVID based on different epidemiological or clinical criteria.”
But, their names will be kept on a list and they will be recontacted, for enrolment as the post-COVID clinic’s capacity and resources evolve.
The IRCM post-COVID-19 clinic phone number is 514-987-5581, for those who meet the criteria above and wish to make an appointment or get their name on a waiting list.
Once admitted, people will be invited to be part of the research and in that context “they will receive what I consider [to be] the executive suite of clinical evaluations,” Falcone said.
Health-care staff will first screen participants and patients online, using questionnaires to gather information about their dietary history, their general well being and activity level.
An in-person appointment will then be scheduled and will include a complete physical exam,. Patients will be asked to give blood, urine and stool samples.
It’s known exactly how long patients will be followed. It’s somewhat dependent on the availability of funding, said Falcone but her goal is to follow patients for five years, and create a biobank of samples and tissue that could help other scientists with their research.
The clinic’s approach to helping people manage symptoms until treatments are established, will also mean evaluating their lifestyle and habits.
“As doctors and researchers we need to think holistically and not it’s not always easy to do that. It requires resources,“ said Falcone.
Fortunately, the IRCM has some of those resources built-in: a team of specialists for each organ system, dieticians, kinesiologists and a gym used for research right on site.
The clinic will also welcome people who were ill with COVID-19 but who do not have any obvious lingering symptoms because there could be “silent” disease.
WHAT IS KNOWN ABOUT POST-COVID SYMPTOMS?
The anecdotes about long-lasting and strange symptoms that sometimes came and went have been the subject of conversations and media reports for many months.
Dr. Falcone lists off a few of the most common ones: chronic fatigue, shortness of breath, chest pain, neurological symptoms often referred to as ‘brain fog’ and joint pain.
“I was reading these testimonies, thinking it’s sort of like an invisible disability, something where you’re expected to bounce back and you can’t,” said the CHUM physician.
Now, however, Falcone is reviewing data from studies that are emerging from Italy, Switzerland and China, reporting that patients are having post-COVID complications as far as seven months out.
Researchers have even documented developing illnesses they are linking to COVID-19, though symptoms of the illness have not yet appeared, said Falcone, providing the example of diabetes.
“It might be related to the infection, or renal disease. You might not feel that symptom and, whoops, we get a blood test and we notice there’s something going on.”
She said in some studies, patients are reporting as many as 13 persistent symptoms, “and that was in 40 to 50 per cent of the cohort being evaluated.”
ON A MISSION
Dr. Falcone said she understands why doctors in Quebec might be daunted by the prospect of delving into post-COVID research and care.
The extreme fatigue related to treating COVID and non-COVID patients alike has taken a toll on healthcare workers, and now there is the added worry about whittling down the waiting lists.
But Falcone is far from daunted, motivated by the commonalities between the new post-COVID clinic project and her own area of research.
When she worked under the leadership of Dr. Fauci, the specialist studied chronic inflammatory complication in patients with inherited immune defects.
“So, here we are in the context of a pandemic and everyone, and rightly so, is focusing on the acute illness, how do we manage it, how do we get it under control.”
But the acute presentation of the disease also got Falcone thinking, especially when she learned some COVID-19 patients were suffering from “a tremendous cytokine storm,” - a severe immune reaction.
She wondered how she could put her expertise to use, to study why that was happening and what the effects could be long term. “And that’s how the project was born,” said Falcone
But now all the pieces are all in place, including government support and the clinical resources they require.
So Falcone said she is also mobilized to help change the programming for so many who have suffered for so long.
“I put myself in the same situation. What would it be like if I had COVID and I could not perform to the level I expect of myself on a daily basis, could not show up for my family?"
Falcone said she wants people “to know they’re being heard and we’re going to try to find an answer.”
Editor’s note: The section ‘Who is eligible’ is being updated regularly to reflect ongoing updates from the clinic.
