Montreal clinic hopes to find answers for COVID 'long haulers'

As a mother of two young children, Oana Silaghi-Bedikyan knows exhaustion.

But nothing prepared her for the debilitating fatigue she's had in the year following her COVID-19 infection.

Suddenly, simple tasks like making breakfast, taking her girls to the park or grocery shopping wiped her out.

"It was devastating," she said.

Sleep disturbances exacerbated her fatigue.

For months, the 43-year-old would be jolted awake every night, her heart racing. She'd then be unable to sleep again for hours.

One night, overcome by thirst, she didn't know how she'd muster the energy to get up off the couch for a glass of water.

"I was so exhausted," Silaghi-Bedikyan recalled, choking back tears. "That was one of the low points for me in this journey so far."

Silaghi-Bedikyan and her family got COVID-19 last March after spring break.

Her husband and children had a nagging cough for about three weeks.

Silaghi-Bedikyan never developed a cough, but couldn't eat or drink anything without painful acid reflux.

She'd never had digestive problems before, not even during her pregnancies.

In addition to the night jolts, her heart ratewould suddenly skyrocket while she was washing the dishes or out for a walk.

"I would start sweating and I would have to sit down," said Silaghi-Bedikyan, who lives in Baie-D'Urf, a Montreal suburb.

At another point, her heart rate dipped to a sluggish 50 beats per minute.

She also kept losing weight, forcing her to buy a new wardrobe.

"I honestly thought I had cancer," said Silaghi-Bedikyan. "I didn't understand what was going on."

Post-COVID clinic now open

Silaghi-Bedikyan consulted doctors, but when she still hadn't improved after four months, she went to the hospital.

They ran blood work and did ultrasounds, but everything came back normal.

"He basically said, you know, I have good news and bad news. The good news is that there's nothing wrong and the bad news is that there's nothing wrong because we don't know what's causing this," she recalls the doctor telling her.

Silaghi-Bedikyan is among a growing number of people, known as "long haulers," who are no longer infectious, but are unable to shake off the residual effects of the virus, weeks or even months after first falling ill.

Last month, the city's first post-COVID clinic opened at the Montreal Clinical Research Institute (IRCM) on des Pins Avenue. Similar clinics exist in Sherbrooke and Chicoutimi.

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Dr. Emilia Liana Falcone, an infectious diseases specialist, says there is much to learn about how the virus is affecting people months after they test positive.

"We're still very much in the phase of trying to understand what's going on trying to understand what's causing it so eventually we can get at the best management," said Dr. Emilia Liana Falcone, the Montreal clinic's director and an infectious diseases specialist.

Persistent symptoms can include chronic fatigue, difficulty breathing, joint pain, skin problems as well as neurological issues, described as a sort of brain fog.

Adults between the ages of 18 and 100 who were infected or exposed to the virus can participate in the study. There is room for 570 patients, although extra spots may be available if the clinic can secure more funding.

Once a patient is deemed eligible for the study, their general health, diet and COVID-19 symptoms at the outset of the infection will be examined.

They will then undergo a slew of tests including blood samples, lung and kidney function measurements, glucose monitoring and an echocardiogram. Any abnormal results will be flagged.

The clinic will loop in family doctors and will refer patients with acute or urgent medical issues to specialists.

By pooling their research, Falcone hopes the medical community will be able to establish clear guidelines doctors can use to diagnose and treat post-COVID symptoms.

"We were really the epicentre of the first wave in Canada," said Falcone. "Clearly there is a need. There's a lot of cases and it's critical that care be accessible in Montreal."

COVID-19 is a 'ninja'

Marie-Michle Lajoie is cautiously optimistic the clinic may help her get to the bottom of her long-term symptoms.

The 48-year-old was travelling with her husband in Mexico City last March when she woke up with a sore throat.

Rarely sick, Lajoie figured it would quickly go away.

But rapidly, she lost her appetite and began to experience profound fatigue.

"I couldn't even walk 10feet," said Lajoie, who describes her pre-COVID self as the "Energizer Bunny."

She ended up hospitalized for 17 days in the intensive care unit, where they eventually tested her for COVID-19. She was positive.

The coronavirus attacked her pancreas, triggering a sudden onset of diabetes in the previously healthy, active woman.

At first, she had to inject insulin daily, but she is now able to control the diabetesthrough diet and a small amount of medication.

Nearly a year after her COVID-19 diagnosis, Lajoie gets cramps andpain in her legs, as well as shocks and pain in her head, teeth andchest.

The cold aggravates the neuropathy in her legs, so she hasn't left the house all winter.

Lajoie estimates she's lost about 25 pounds, which has left her weak.

Bouts of unpredictable fatigue make it difficult to build up her strength. Even emptying the dishwasher can be exhausting.

"COVID is a ninja," said Lajoie. "It never ceases to surprise me."

Government support

Lajoie and Silaghi-Bedikyan have found some solace in the COVID Long Haulers Support Group Canada page on Facebook.

With more than 12,000 members, it's a safe place to share their experiences.

"You don't feel alone anymore," said Lajoie, who says she was sometimes made to feel it was all in her head.

The group has also taken on an advocacy role and has asked the federal and provincial governments for more help.

While statistics track the total number of COVID-19 cases, deaths and recoveries, they don't capture the tens of thousands of Canadians still suffering from unresolved health issues, saysSusie Goulding, the group's founder.

"It's misleading and then it becomes insensitive to the people who are sick," said Goulding, a single mother from Oakville, Ont.

She wants the government to recognize long haulers and define post-COVID syndrome.

Goulding would also like to see Canada follow in the footsteps of the United Kingdom, which quickly set up a network of rehabilitation clinics to help patients suffering from the long-term effects of coronavirus.

"The government is in triage mode," said Goulding."They're busy putting out the fires. They were busy containing the spread of the virus. They were dealing with acute care, keeping the hospitals up and running. And then long haulers came along and we're still sitting in the waiting room."

Hanging on

Silaghi-Bedikyan decided to share her story to raise awareness. She also wants other sufferers to have hope. Recently, she started feeling better and most of her major symptoms have dissipated.

But she's not back to her old self yet.

She still has acid reflux and has to stick to a bland diet to keep it at bay.

Fatigue also continues to be an issue, but it's not as intense as it once was.

She's grateful her husband works from home so he can take over if she needs a break.

With her children, she is honest and explains to them that she's tired and it's taking her body longer to heal.

"I tell them it's not forever," said Silaghi-Bedikyan.

"All I can do is just hang on, hang on and not get discouraged."