Canadians with long COVID are struggling with myriad symptoms and patchwork treatments

A year ago, Sandy Choiniere was so weak from long COVID, she couldn’t hold her 20-month-old daughter in her arms while standing.

Today, she feels functional, but only because she’s being careful, listening to her body and resting when she needs to. “I sometimes still feel like a 35-year-old woman in the body of a 70-year-old lady,” she says. “Sometimes I have to cancel plans I have with friends because I am too tired,” something that has been hard to accept.

Ms. Choiniere is one of the Canadians who shared their stories of long COVID with The Globe and Mail in 2023. Twelve months later, we followed up to see how they’re doing.

Of the 11 people who responded, one was doing worse, spending 23 hours a day in a darkened room and wearing ear plugs most of the time. Five were doing about the same, with one saying she still felt like a living corpse. Four said they were doing better, with one saying he felt more like himself now than at any time in the past two years. And one person said she was about 90-per-cent recovered, having been told by doctors that what is left will likely be chronic and need to be managed for the rest of her life.

They’re only 11 of the estimated 3.5 million (and counting) Canadian adults who reported experiencing long-term symptoms following a COVID-19 infection.

There is still no known test for long COVID, also known as post-COVID-19 condition (PCC), so diagnosis is made following the World Health Organization’s definition of “symptoms and medical complications that persist, return, or emerge 12 weeks after the initial acute COVID-19 infection phase.”

Manali Mukherjee, an assistant professor in the department of medicine at Hamilton’s McMaster University, says “anybody who has persisting symptoms that they didn’t have before or that cannot be explained by any other diagnosis” has long COVID.

A February report from the federal Office of the Chief Science Advisor lays out the wide range of body systems affected by PCC – the respiratory, systemic, nervous, cardiovascular, gastrointestinal, skin, musculoskeletal and endocrine systems – and their related symptoms.

The most commonly reported symptoms are fatigue, shortness of breath and cognitive dysfunction, but the list is long, ranging from hair loss and tinnitus to allergic reactions and feeling hot and cold sensations.

Laurie Woelfle, 62, experiences vertigo, sensitivity to light and sounds, horrendous fatigue and many neurological issues. Candice Makhan, 49, has chest pain, heart palpitations, loss of appetite and dizziness, among other symptoms. Adriana Patino’s heart rate will spike for no reason, caused by dysautonomia, which randomly puts her body into fight or flight mode.

One of Nadine Hardiman’s worst symptoms is post-exertional malaise, where her body has no energy to move or think after doing something physical. “Your body just dies,” she says. Bev Conquergood, 61, still hasn’t recovered her sense of taste and smell.

The February report explains that the modest knowledge of the causes, prevention and treatment of post-COVID-19 condition affects the care people can access.

“Is there a one-size-fits-all treatment for long COVID at the moment? No,” says Dr. Mukherjee. So physicians are treating specific symptoms as they arise.

Some of the people who spoke with The Globe are getting treatment and support from long COVID clinics – and some who have been dismissed by them. Some are part of ongoing studies, and some have navigated their illness mostly on their own.

Ms. Woelfle in Calgary sees a primary care physician, a neurologist, a cardiologist, an endocrinologist and an internal specialist, and she attends weekly restorative sessions with a physiotherapist with the Breathe Long COVID Support Program at Synaptic Health. She found a lot of her long COVID resources on her own, with help from her primary care physician to connect with specialists.

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Ms. Hardiman lives in Prospect Bay, N.S., and is on her fourth nurse practitioner in four years owing to office turnover, something that’s made getting care more difficult. “Every time there’s something new, it’s like, I gotta start all over again,” she says.

Ms. Choiniere saw an occupational therapist to help her take care of her young daughter and manage her tiredness, and a chiropractor to help with dizziness. She had follow-ups with her family doctor and cardiologist and is on the waiting list for a long COVID clinic in Montreal.

The vast differences in care they’re receiving reflect the national picture. A December, 2023, report from Statistics Canada said that about 40 per cent of those with long-term symptoms who sought health care about their symptoms reported difficulties with access.

“Whether it’s rural or whether it’s metropolitan,” access is a problem says Dr. Mukherjee, owing to “the sheer volume of people who are looking for that help.”

To fill the gaps, COVID long-haulers, as they call themselves, have turned to Facebook groups and X, formerly known as Twitter, for advice, tips and to share resources. Ms. Patino wrote a guide for post-exertional malaise to help other people with the same struggle. Melinda Maldonado’s husband became a “research warrior,” scouring support groups for leads on treatment and symptom management.

Dr. Mukherjee’s research team at McMaster University is working on the molecular level, looking for inflammatory markers that are increased in the blood in her study of more than 120 individuals with long COVID. Their hope is to be able to develop a simple blood test that can tell us who will recover from acute COVID-19 and who will get long COVID, and even further, if there are biomarkers that could identify what kind of issues long COVID will cause in someone.

A national non-profit group called the Canadian Covid Society also launched last week with co-founders saying the organization is needed as public health agencies have pulled back on COVID-19 prevention measures and awareness campaigns.

“There’s a lot of positive energy in the world of research so you always keep hope,” says Ms. Patino, “but at the same time, there is a part of you that three years in has to say, ‘Well, this may be the best it gets.’”