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Learning to live with the ‘devastation’ of Long COVID


“The devastation it is causing to these individuals in the prime of their lives is extraordinary.”.

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In their past lives, the exercises would have been almost laughably easy — standing up from a chair and sitting down again, stretching, lifting some light weights. But that was before COVID-19.

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Today, those exercises are a challenge for many patients taking part in The Ottawa Hospital’s groundbreaking post-COVID rehabilitation program.

Most are people in their primes who led busy, active lives before developing long COVID. Now they struggle to complete basic tasks. And there are more people like them waiting for help.

The program, which offers physical, psychological and social support and skills to people living with long COVID, can’t keep up with demand.

And that demand is expected to grow even as researchers are beginning to understand more about what causes long COVID.

Those who have participated in the week-long, small-group, virtual program say it has been a game-changer. Not because it cures them, but because it gives them tools to cope and helps them understand that they are not alone.

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“I had no grand expectations that this rehab was going to fix me,” 50-year-old Kerri-Lynn Herbert said. “For me, it was about confirming that I wasn’t alone.”

Most participants had relatively mild cases of COVID-19, but the lingering after-effects have been serious enough to affect their abilities to function in daily life and work. The most common symptoms among participants are extreme fatigue that worsens with too much activity, cognitive difficulties such as brain fog and problems with breathlessness, anxiety and fear and chest tightness.

Tellingly, some of the program’s key lessons include acceptance and learning to pace themselves. With long COVID, pacing is everything.

Unlike other health issues requiring rehabilitation, too much activity can have serious detrimental consequences for many long COVID sufferers. One participant talked about taking a shower and getting dressed up to have dinner out with friends after reaching a point where she felt that was something she could do. After an evening of being congratulated on how well she looked, she spent the next two weeks in bed, recuperating.

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“The devastation it is causing to these individuals in the prime of their lives is extraordinary,” said Wendy Laframboise, the nurse practitioner who coordinates the program.

Since it began last year as a pilot, 41 patients have been through the hospital’s pioneering rehabilitation program. There are another 53 people waiting to get in, but that is just the tip of the iceberg.

Given the numbers of Ottawa residents who have had COVID, Laframboise says there are likely thousands of people in the city who have had some level of long COVID. Many will be health workers, who have been infected with COVID-19 at a higher rate than the rest of society throughout the pandemic.

Dr. Shawn Marshall heads the division of physical medicine and rehabilitation at the University of Ottawa and The Ottawa Hospital.
Dr. Shawn Marshall heads the division of physical medicine and rehabilitation at the University of Ottawa and The Ottawa Hospital. Photo by Ottawa Hospital Research Institu /Handout

Dr. Shawn Marshall, who heads the division of physical medicine and rehabilitation at the University of Ottawa and The Ottawa Hospital, says the program has been operating on existing funding, but it requires direct funding to meet the needs of patients.

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“This is affecting peoples’ lives,” he said. “These people are very significantly impacted.”

Many experts worry long COVID has the potential to overwhelm the health system and seriously impact society. While some people will recover fully, others might never regain the physical abilities they had previously.

Long COVID is marked by a range of symptoms including shortness of breath, fatigue, headaches, brain fog and other neurological problems and can last for months or longer after COVID-19 diagnosis.

Between 10 and 30 per cent of people who have had COVID are believed to develop long COVID, according to a calculation from Ontario’s COVID-19 Science Advisory Table and elsewhere.

Research has underscored how devastating long COVID can be, but it is also beginning to offer hope.

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A Canadian study published this past week pinpointed microscopic abnormalities affecting how oxygen was exchanged from the lungs to the red blood cells in people with long COVID as a cause. The findings could pave the way for treatment.

Recent research also points to an increased risk of neurodegenerative disorders, including Alzheimer’s disease and Parkinson’s disease, for those who test positive for COVID-19.

Until there is treatment, what that means for individuals is unclear. Some will return to work and to their baseline of health and energy, and some will live with long-term changes to their health and abilities.

Participant Monique Stone considers herself lucky in many ways. The 51-year-old Anglican priest at Julian of Norwich Church on Merivale Road has been able to return to work, though at a different pace than before COVID-19.

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“I am able to do what I need to do. My workplace allows me to adapt. If I worked at Tim Hortons or was a nurse working 12-hour shifts, there is no way I could do it. I can’t even imagine,” Stone said.

Among her symptoms are shortness of breath, brain fog and exhaustion.

The rehab program affirmed for her that, “This is really about pacing yourself and learning to live differently. A component of rehab is talking about adapting to new realities and new limits.”

Stone tested positive for COVID-19 in January 2021. The acute phase of the illness was not severe.

“It was like a bad cold, not the worst illness I have had in my life, to be honest.”

She never fully recovered, though. Then, about a month after testing positive, she began to experience a level of fatigue she had never felt before.

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“It was almost a surreal lack of energy and lack of ability to do anything.” She took a month off work, unable to do very much. Even walking around a grocery store, she said, “brought me down.” She learned to respect her limitations.

A file photo of The Ottawa Hospital General Campus. Since the hospitals’ long COVID rehab program began last year as a pilot, 41 patients have been through it. There are another 53 people waiting to get in.
A file photo of The Ottawa Hospital General Campus. Since the hospitals’ long COVID rehab program began last year as a pilot, 41 patients have been through it. There are another 53 people waiting to get in. Photo by Ashley Fraser /Postmedia

Since then, the rehab program has helped her learn to pace herself, and she is seeing improvement.

“My hope is I continue to be able to manage well within some new boundaries. I consider myself pretty fortunate. Compared to some people, I live a really good life,” Stone said.

One big benefit of the program for Stone and others is connecting with others going through similar experiences.

“Being part of this group was everything. It made me feel better,” said Herbert, who has also completed the rehab program. “You don’t feel like you are alone anymore.”

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She and members of her group are planning to meet in person for the first time this summer.

During the early part of the pandemic, Herbert, then 49, did everything she could to avoid COVID-19 because she already had lung disease.

“I thought, ‘If I ever get COVID, I will probably die’.”

She survived when she and most of her family got the virus in January 2021, but she has never regained the level of energy and health she had before COVID-19.

More than a year later, she lives with intense nerve pain, crushing fatigue, shortness of breath and loss of smell.

She is still hopeful that she will get back to where she was pre-COVID, but the program has given her support and tools to cope with her current condition. Some of those tools offer ways to reserve energy when doing household chores such as cooking and cleaning.

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Those taking part in the program receive help from a team of clinicians including physical and occupational therapists, psychologists, social workers, people with financial expertise and those who can help with people returning to work.

The program was launched at The Ottawa Hospital in July 2021 based in part on recommendations from the World Health Organization for long COVID rehabilitation, Laframboise said. Patients must be referred by physicians.

Most participants in the program are women, and the average age is 44. Many are health workers or are in leadership roles in their work. Often they have jobs they are unable to return to, or at least not full-time, and they feel they are being a burden to their families, Laframboise added.

Patients who have been through the program say they are better able to manage their symptoms and their quality of life has improved.

“It gives them hope. It gives them support.”

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