Coping with long COVID: How a pilot program aims to help Manitobans living with the illness
When MaryLynn McLeod first tested positive for COVID-19 in December 2020, her focus was on staying alive.
"It was very scary. I didn't know if I was suddenly going to get pneumonia, if I was going to die or if I was going to live," McLeod said.
More than a year later, that focus has shifted to learning how to live with and treat symptoms of long COVID.
"It continues to be one day at a time," McLeod said.
The World Health Organization explains post COVID-19 condition, also known as long COVID, as "the illness that occurs in people who have a history of probable or confirmed SARS-CoV-2 infection; usually within three months from the onset of COVID-19, with symptoms and effects that last for at least two months."
Fatigue, shortness of breath and cognitive dysfunction are among the list of common systems, the WHO says.
McLeod, 54, managed her COVID-19 infection at home and was never hospitalized.
She had a cough, chills, fever and excruciating migraines.
When public health called to let her know her isolation period was over and she was free to resume life as normal, she was still sick.
"The fatigue was debilitating," McLeod said. "I literally could not do more than one thing around the house. I would get up to do the dishes or cook a meal and I'd have to rest after."
Since then, her symptoms have included extreme fatigue, memory problems, headaches and increased heart rate.
Trying to find out what was making her feel the way she did and what treatment was available also presented challenges.
WATCH | Living with long COVID:
She saw her family doctor, who she said initially told her to rest, which she did.
But she also did her own research. She went online and asked other COVID-19 long-haulers what diagnostic tests they were getting and what specialists or rehabilitation programs they were being referred to.
"It was very much advocating for myself and trying to figure out what I might need," she said.
McLeod isn't alone.
While Manitoba Shared Health said it doesn't track the number of patients with lingering symptoms following a COVID-19 infection, it's estimated there are thousands of long COVID patients across Canada.
The World Health Organization says current research shows 10 to 20 per cent of COVID-19 patients "go on to develop prolonged symptoms that may be post COVID-19 condition".
A new pilot program spearheaded by the Winnipeg Regional Health Authority's My Health Teams and the pulmonary rehabilitation program aims to help educate Manitobans with long COVID about symptoms and treatment and give them an opportunity to connect with each other.
"These are people that went from one health status one day to a completely different health status the next, and that's terrifying," said Dana Kliewer, a physiotherapist in the pulmonary rehabilitation program at Deer Lodge Centre.
Kliewer, who helped get the pilot program started, said the pulmonary rehabilitation program sees people with chronic lung conditions and lung impairment, but long COVID can affect multiple body systems.
The Living with Long COVID: Education and Support Group, which launched in February, brings together health-care providers with a variety of backgrounds, including occupational therapy, physiotherapy and respiratory therapy, who can provide information and answer questions on a variety of health issues related to long COVID.
The virtual sessions focus on topics such as fatigue management, breathing and the nervous system, brain fog after COVID-19, managing anxiety and guilt, and medications.
"Patients are needing this support, needing this guidance, and we're trying to find new ways of offering that support," said Rukmali Mendis, a chronic disease management clinician with My Health Team within the WRHA.
There isn't one test or one symptom that can diagnose long COVID, which is still being researched, and can be hard to navigate, Mendis said.
"The nice thing about this being such a multidisciplinary, collaborative approach also is that long COVID affects multiple systems, multiple organs," she said.
"Having this expertise share their knowledge and what they've learned and what works, what doesn't work with these clients, I think, is really important."
Initially the plan was to start the pilot program with a group of 10 people with long COVID, but the registration list now sits at more than 40, Kliewer said. She estimates 30 people have been taking part in each session.
Registration is now closed.
Occupational therapist Marlee Mayer, who was also involved in getting the program running, has been seeing clients with long COVID, ranging in age from their late 20s to mid-70s, for more than a year.
Mayer has seen symptoms such as brain fog and fatigue affect people's daily lives when it comes to work, tasks at home and getting back to physical activity.
Her work includes helping people develop strategies to help focus, memory and conserving energy.
"It takes a while to kind of get to know your new self, living with long COVID and trying to know, like, what makes symptoms worse and what makes them better," Mayer said. "And everybody's a little different with that."
It's also been important to make sure clients know they aren't alone and the symptoms they're experiencing are real, she said, and this program gives people the opportunity to connect.
McLeod isn't part of this support group, but she wanted to share her experience with long COVID to raise awareness and help others who might be experiencing the same thing.
Along with seeing her family doctor, she has had diagnostic tests, sees a specialist and has been involved in a rehabilitation program.
"I think it's really important to have a plan that rehabilitates the whole body, not just one symptom at a time," McLeod said.
Shared Health said Manitobans experiencing symptoms consistent with long COVID can access a variety of specialists for treatment via referral, most likely from their family a doctor.
"A working group that includes specialists in chronic and complex medicine and rehabilitation has been established to support this approach and develop recommendations to address the needs of Manitobans with long COVID and their care providers," a Shared Health spokesperson said.
Kliewer said it's important to raise awareness about the illness because as long as COVID-19 persists, there's a risk of long COVID.
"It can have a tremendous impact on your life even if you're a young person," she said.