The pandemic may be in the past but long-COVID remains a concern

Disability Law /
Courtney Mulqueen
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By Tony Poland, LegalMatters Staff • The pandemic may be behind us but there remains those with long-COVID who continue to struggle with a serious illness that is often misdiagnosed, frequently dismissed and not fully understood, says Ontario disability insurance lawyer Courtney Mulqueen.

Mulqueen, principal lawyer of Mulqueen Disability Law Professional Corporation, says COVID-19 left an indelible mark, leading to mass shutdowns and resulting in millions of deaths worldwide. However, she says people tend to want to leave the fallout of the deadly virus in the past.

“COVID is not really on people’s radars these days,” Mulqueen tells LegalMattersCanada.ca. “However, just because you don’t hear about it in the news anymore doesn’t mean a problem does not exist. This is a disease with potentially serious consequences and it is still lingering. And I am concerned for those with long COVID because it can be completely incapacitating. The prognosis for some people is very much unknown.

“I deal with many long COVID long-term disability (LTD) claims and it is heartbreaking to realize what so-called long-haulers are going through,” she adds. “Insurance companies are unsure of what to do with them.”

Symptoms persist for more than 12 weeks

Also known as post COVID condition (PCC), long COVID is what happens when symptoms of the virus persist for more than 12 weeks after the original infection, according to the Public Health Agency of Canada.

People can display symptoms of post COVID-19 even if they weren’t formally tested and diagnosed with the virus or had only mild to moderate symptoms when they had it. Symptoms can persist for weeks or months from the initial COVID-19 infection, but you can also develop new ones, according to the government website.

The ailment affects everyone differently and there have been reports of hundreds of symptoms which can vary in severity, the government states. Symptoms “can sometimes disappear and reappear without having another diagnosis to explain them. Some patients report that physical and mental over-exertion can make the condition worse,” the Public Health Agency states.

According to the Mayo Clinic conditions linked to long COVID may get better over months or could last years. Common symptoms include:

  • Problems with memory, often called brain fog.
  • Extreme tiredness, especially after activity.
  • Fast or irregular heartbeat.
  • Lightheadedness or dizziness.
  • Problems with taste or smell.
  • Sleep difficulties.
  • Shortness of breath.
  • Cough.
  • Headache.
  • Digestion problems, constipation or bloating.

Ailments people may be diagnosed with due to long COVID include heart disease, anxiety, mood disorders, stroke or blood clots, diabetes or fibromyalgia.

‘Number of issues is troublesome’

“The number of issues people are dealing with is troublesome,” Mulqueen says. “It can be issues with their heart, their lungs or their kidneys. It can be a neurological issue or they can have chronic fatigue or joint pain.”

She says many people struggle just to understand what is happening to them.

“Many of my clients have co nsulted with every possible specialist,” says Mulqueen. “Sometimes there will be some abnormal findings. Other times a doctor will be unable to identify the problem.”

“They may be beyond exhausted and unable to think clearly or concentrate. The cognitive, the physical and the mental fatigue can be overwhelming,” she adds. “So much so that it is not unusual to have to reschedule appointments if they are struggling. I also find it is helpful to break up meetings into shorter sessions over a few days and follow up with detailed emails they can refer to later. It is important to provide a supportive environment as a  trauma-informed disability law firm.”

The Toronto Star reports that as of June 2023, 19 per cent of all Canadians – or about 3.5 million people ­­– who contracted COVID-19 had developed PCC. 

A “substantial” number of them have been “severely limited in their daily life and work (or) school since the early pandemic,” Robby Nieuwlaat, an associate professor at McMaster University told the Star.

“In 2023, about 600,000 adults in Canada had missed time from work or school due to longer-term symptoms, whereby they missed 24 days on average,” Nieuwlaat said. “Further, about 100,000 adults were unable to return to work or school because of their longer-term symptoms.”

Fewer places to turn for help

Mulqueen says her clients are people who had active lives and “who now suddenly can’t seem get better.” To make matters worse, they are finding fewer places to turn for help, she says.

“The problem is the government cut funding to long COVID clinics and they did it almost overnight,” Mulqueen explains. “There are still some places where people can get help but what we really need is a multi-disciplinary approach.”

Her clients are also faced with the challenge of proving their long-term disability (LTD) claim to their insurance provider, she says.

“The system, for the most part, is set up for people who have the ability to do all the things it takes to prove an insurance claim,” says Mulqueen. “But those with PCC are so mentally and physically fatigued that they miss deadlines for filing information to support their claim. It can be demoralizing.”

She says recovery timelines cannot be predicted with any real accuracy.

“It can take so long for people to get better and what happens is the insurer gets impatient and wants people off claim,” Mulqueen says. “They assume people should be better and they end up pushing them into rehabilitative return-to-work programs. Some of the advice my clients are getting is ‘you should be more active.’ However, that can be harmful to someone struggling with long COVID.

“These are people who are so highly motivated to get better. They are grateful to be offered any kind of help but typically what the insurer is offering is rehabilitation so they can work, not necessarily something that is going to help them get better,” she adds. “People are being pushed to return to their jobs before they are ready and that can have consequences.”

Mulqueen says PCC differs from other LTD conditions “because there are so many different moving pieces.”

Fear suffering a permanent impairment

“There is such an interplay between the physical and the cognitive and the psychological,” she notes. “My long COVID clients are fearful that if they push themselves too hard there is a chance they will not only relapse but potentially suffer permanent impairment and be stuck in a chronic fatigue state.

However, she says there is reason for optimism, pointing to recent research that could help treat “brain fog,” a debilitating symptom of long COVID which is characterized by difficulty thinking clearly, forgetfulness and trouble focusing. It is a common complaint among COVID long-haulers.

Researchers found that those with PCC had significantly higher levels of a certain brain receptor than their healthy peers and the more they had, the worse their symptoms tended to get.

“Our findings clearly demonstrate that long COVID brain fog should be recognized as a legitimate clinical condition. This could encourage the healthcare industry to accelerate the development of diagnostic and therapeutic approaches for this disorder,” Professor Takuya Takahashi from the Graduate School of Medicine at Yokohama City University stated.

His report concluded that “the team’s findings resolve key uncertainties about the biological basis of Long COVID brain fog and may pave the way for novel diagnostic tools and effective therapies for patients suffering from this condition.”

As well, the researchers at the University of Alberta last year “pinpointed two proteins that could serve as markers for identifying patients with long COVID — a discovery that may lead to treatments that will bring better quality of life for the millions of people suffering from the debilitating condition.”

“We are seeing more encouraging news for long-haulers but the reality for many of my clients is it is one step forward, two steps back,” Mulqueen says. “One part of a person’s health may be getting better while another is getting worse.”

Could potentially lose benefits

She says it is important to note that even if you are receiving LTD benefits, at the two-year mark it is not uncommon for an insurer’s definition of disability to change from being unable to perform the duties of your own job to being unable to perform any occupation that you are reasonably suited to. That can mean potentially losing your benefits if you are unable to return to work.

“It can be unrealistic to expect people with long COVID to return to work in any capacity,” Mulqueen says. “The job may not be as demanding as the one they had but for the insurance company to say, ‘We realize you have some fatigue but you should still be able to work as a store greeter’ is disregarding all they are going through.

“Even if it is a sedentary job, the reality is this person still must get up every morning, get ready, go into work and perform their duties even as they are struggling,” she adds. “The level of fatigue these people experience should not be minimized. They may be able to function one day but it can take them several more to recover.”

Mulqueen says insurers need to understand these are not people who are unmotivated to get better or “choosing to stay home just to put their feet up.”

“They want and need to get better but they are so limited in what they are able to do. There must be some level of patience, some expertise that goes not only into the treatment of this condition but in the assessment of these disability claims,” she says. “People with PCC need specialized treatment, sensitive to the fact that they cannot overdo it without risking their long-term health

“They must be carefully monitored and there needs to be thoughtfully crafted plans to help them get better and ensure they are not forced back to work before they are ready.”