When her symptoms continued long after her initial COVID-19 infection, Valérie Murray felt like she didn’t know where to turn anymore, as if stuck in an endless loop.
Murray, 38, knew she was suffering from what’s known as long COVID. But the different doctors she consulted could provide few answers beyond that. Often, she was told her symptoms were likely anxiety-related. Or, as she says, “that it was all in my head.”
Meanwhile, the once-active mother of two could barely look through her fridge without collapsing. A persistent cough and racing heart stopped her from sleeping at night. And the slightest effort could trigger extreme fatigue, leaving her bedridden.
Then, Murray finally got some clarity. After all other possibilities were ruled out, a stay at the Montreal Heart Institute led to a doctor sitting her down.
“What I’m about to tell you is important: this is not in your head,” Murray remembers being told. “Your symptoms are caused by an illness called myalgic encephalomyelitis.”
Once known as chronic fatigue syndrome, myalgic encephalomyelitis (ME/CFS) has long been poorly understood, overlooked and often stigmatized.
Now, early research suggests, up to half of all COVID long-haulers could meet the criteria for an ME/CFS diagnosis. And as experts probe the link between the two illnesses — and COVID-19 cases continue to accumulate — ME/CFS patients new and old are urging people to recognize how debilitating and life-altering it can be.
Claudine Prud’homme has lived with ME/CFS for more than a dozen years.
A veterinarian by trade, Prud’homme was forced to step away from her career. Today she’s a member of the scientific committee of the Association Québécoise de l’Encéphalomyélite Myalgique (AQEM).
Prud’homme says the best way she’s managed to get people to understand what living with ME/CFS is like is through comparisons.
To Prud’homme, an errand as simple as going to the corner store can leave her feeling as though she’s run a marathon. For many, the symptoms are so severe they become bed- or house-bound, preventing them from working and derailing their lives altogether.
“We might not always look sick,” said Prud’homme, 51. “But it really is a tragic illness.”
ME/CFS attacks the body in different ways. A complex and chronic illness, it can strike a person’s muscular, nervous and immune systems. Its cardinal symptom is what’s known as “post-exertional malaise” — a worsening of symptoms, or appearance of new ones, after minimal physical or mental exertion.
In nearly three-quarters of patients, including Prud’homme, ME/CFS is triggered by a viral infection.
So when the pandemic struck, Prud’homme knew the dangers of having a virus circulating at such a high rate. And as she feared, as months went by, more and more people started sharing stories online of persistent symptoms long after testing positive for COVID-19.
To people who’ve suffered through ME/CFS, there was apparent overlap. For one, there was a connection with a viral infection. But then also the symptoms: people reported extreme fatigue, brain fog and sensory disturbances. Crucially, they were also crashing after trying to exercise their way through their symptoms — often on recommendation from their doctors.
“The idea that you just need to push yourself to get better and back to how you used to be is engrained in society,” Prud’homme said. “But with ME/CFS, it’s been years we’ve known it doesn’t work that way.”
As early as the fall of 2020, the AQEM tried to raise the alarm about a possible link between long COVID and ME/CFS. In interviews, they warned people about the risks and pushed the government to prepare for the influx of ME/CFS patients they saw coming.
But they feel their calls went ignored, compounding years of frustrations.
For decades, Prud’homme said, people with ME/CFS in Quebec have felt neglected by the system, with little access to services or compassionate care, in large part due to health professionals not understanding the illness.
In 2010, a provincial health institute had identified the need to address the issue. Recommendations included creating a provincial reference centre, training family doctors to better detect the symptoms and teaching about the illness in universities. For the most part, they were never implemented.
“Now we see all these long COVID patients that will end up developing ME/CFS,” Prud’homme said. “Had this been addressed 10 years ago, we’d be much more advanced today and better positioned to take care of them.”
Université de Montréal’s Alain Moreau is one of the leading Canadian researchers in ME/CFS. Since 2019, he’s led a national research network on the illness, which he once described as “the medical mystery of the 21st century.”
Throughout the pandemic, Moreau’s research has extended to people suffering from long COVID, probing the link between the two illnesses.
It’s estimated anywhere between 10 to as high as 50 per cent of all people who contract COVID-19 could develop long COVID. Of those, research suggests up to half could meet the diagnostic criteria for ME/CFS. In both cases, women are disproportionately affected.
Given the overlap, Moreau believes the pandemic presents a chance to better understand ME/CFS and, in turn, develop ways of treating or managing it.
“We want to find solutions to stop the progression of the disease,” Moreau said in a recent interview, “because we have this window of opportunity to work at the beginning of an infection, or post-infection, and turn the trajectories around.”
Moreau is optimistic progress can be made, but also blunt about the magnitude of the challenge ahead.
Even in the most conservative of estimates, he believes the pandemic will lead to the number of people with ME/CFS in Quebec — estimated to be more than 70,000 at the moment — nearly doubling in size.
“We weren’t equipped before the pandemic to take care of people with ME/CFS,” Moreau said. “So imagine now.”
Simon Décary, a researcher at the Université de Sherbrooke, expressed similar concerns. He describes long COVID as an umbrella diagnosis with clusters of different diagnoses that fall under it, including ME/CFS.
“We know there is a link, because we have the evidence of the overlap of the clinical symptoms,” Décary said. “But is it exactly the same biological process? That we don’t know yet.”
For nearly two years now, Décary has focused on developing long COVID care models in Quebec and across the country.
Like Moreau, Décary has long warned about what’s to come. Though studies suggest vaccination could substantially reduce the risks of long COVID, the issue is not going away: If COVID-19 becomes endemic, there will always be a virus circulating that could trigger long-term symptoms in people.
As part of its new budget plan, Quebec announced in March it will provide $20.5 million in funding over five years to set up 15 long COVID clinics.
Décary welcomed the announcement. If done right, he said, the plan could improve the landscape not only for long COVID, but for other complex diseases and post-infectious conditions as well.
“We got a lot of work in front of us,” Décary said, “but this could be an investment that changes the course of history for these patients.”
When her symptoms kept worsening after her COVID-19 infection, Murray described them in an online support group for COVID long-haulers in Quebec. Someone suffering from ME/CFS responded, letting her know what she was describing sounded awfully similar and directing her toward resources.
Before then, Murray had never heard of myalgic encephalomyelitis. She credits getting the diagnosis — and connecting with other ME/CFS patients online — with helping her understand what she is going through and finding ways to live with it.
Murray is not sure what her future looks like. Whereas she used to run while pushing her lawnmower, she now uses a wheelchair to get from room to room in her home. And as much as it pains her to say, she no longer believes she will ever return to her old self.
Still, she speaks with resolve and hope for a better quality of life.
To help get there, she’s participating in Moreau’s studies probing the link between long COVID and ME/CFS. And she talks about her diagnosis openly and often, because she believes it’s crucial for people to understand the risks as early as possible.
“Really, what I want is to find solutions,” Murray said. “Because I know I’m not an isolated case, and I fear there will be a lot more people like me than some might think.”
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