From extreme fatigue to brain fog, headaches to sleep problems, mood changes, and cardiac issues, an estimated 10% of people who become infected with COVID-19 are still suffering months or even years after their initial infection.
In an effort to raise public awareness about long-COVID and urge health authorities to develop a proper definition and appropriate response, COVID-19 Resources Canada is designating this Thursday (June 9) National LongCOVID Awareness Day.
“People who know this stuff are starting to ring alarm bells that this virus is not over with us when the initial infection is over in many people,” Senator (Dr.) Stan Kutcher said in an interview.
Kutcher, a psychiatrist and Dalhousie University professor emeritus, is one of five panelists participating in a national, public virtual long-COVID town hall on Thursday afternoon.
“I’m a physician and I’m not an infectious disease expert, but I have been really taken aback at how this virus affects so many different body organs and body systems compared to many other viruses that we typically have,” Kutcher said.
“It’s a respiratory virus, but its impact is not only in the respiratory system.”
Long-COVID is the term used to describe the wide range of more than 200 new, returning, or ongoing symptoms people experience after an infection. In some cases previously healthy people are unable to return to work or even participate in everyday activities due to their symptoms. The Government of Canada calls it post COVID-19 condition. Some sufferers refer to themselves as COVID long-haulers.
Kutcher was infected with the virus in February and said he experienced a “substantive” week of “horrible fatigue” and unusual headaches the likes of which he’d never before experienced.
Four months later, he still occasionally gets short bouts of severe fatigue or “horrific” headaches out of the blue that last for two hours.
“I have to basically sit down and close my eyes and then it goes away,” he said.
“This a very mild experience of this persistence of symptomatology, and some people have it across a whole range of different kinds of symptoms.”
‘Spit in the bucket for what’s actually needed’
Kutcher said there are many unanswered questions, and investing in targeted long-COVID research is critical. We don’t yet know the full range of long-COVID symptoms, how debilitating they are, how long they persist, or what impact they have on people’s ability to continue working and caring for themselves and their families.
“And then we get into the impact on various organs. Brain, heart, cardiovascular. Possibly liver with children, we’re still not sure about that one,” Kutcher said.
“If we just look at the brain, which is an area that I know a little bit more than I know some of the others, there’s potential for early dementing illnesses, potential for various neuropsychiatric illnesses.”
Kutcher said because an influx of long-COVID patients could possibly have a significant impact on the health care system, substantial research investments need to happen now.
While the federal government provided $20 million over five years in Budget 2022 for Canadian Institutes of Health Research on the long-term effects of COVID-19 infections, that funding is also allotted to investigating “the wider impacts of COVID-19” on health and health care systems.
“That’s a spit in the bucket for what’s actually needed. We really need some serious investment through Canadian Institutes of Health Research and probably other agencies to really facilitate and ramp up this (long-COVID) research,” Kutcher said.
“But we also then need to figure out how to take that research into action. What are we going to have to do in our health care system to deal with what we’re finding?”
Kutcher also believes Canada needs to initiate conversations and make arrangements with other countries with research capacity in the area of long-COVID. This includes the National Institutes for Health in the United States and the Medical Research Council in the United Kingdom.
“They have many more resources than we have but we have strengths that they don’t have, so I’d like to see some development of an international consortium that Canada could play an important part in,” he said.
‘I have seen divorce, I have seen separations’
Cardiologist and McGill University professor and researcher Dr. Thao Huynh is also participating in Thursday’s national virtual town hall. She has also completed doctoral studies in public health and epidemiology.
“We are currently conducting a study of our (Québec long-COVID) patients with cardiovascular symptoms. So chest pain, palpitations, dizziness,” Huynh said in an interview.
“We found out that at least 10% of these people have inflammation of the heart on an MRI. This is not small, and it says there are a lot of people out there who do have disease ongoing of their heart two years after their COVID infection.”
In early 2020, before long-COVID was a known entity, Hyunh and her research team undertook a follow-up study of people infected with COVID-19.
That research has since become a program of care, one Huynh said doesn’t receive any government funding. Because many of her patients don’t have primary care providers, she ends up overseeing them and their complex needs beyond those that are cardiac-related.
Some patients travel as far as 12 hours to see her.
“For me it’s very hard to (have) a 20-year-old lady now in a wheelchair and I cannot tell her when it will end. Will she be afflicted for life? Will she be able to have a family? Have a child? That for me is heartbreaking,” Huynh said.
“While there is some research being done, it’s not enough. I treat heart disease and I can exactly tell a patient what to expect. But with long-COVID I cannot, and I cannot get them the help they need.”
Huynh said the pandemic isn’t yet over and we’re facing a second pandemic brought about by long-COVID. She’s frustrated that more isn’t being done.
“Long-COVID is just not physical; there’s mental distress also. Patients who were very healthy and active before cannot go back to work, their quality of life is miserable,” Huynh said.
“Often these patients are young women, they have young children, and they suddenly cannot work and cannot enjoy life, so their spouses have to do that. That’s a lot of stress on the family. I have seen divorce, I have seen separations.”
‘We’re falling behind’
Huynh said in the pandemic’s first wave, between 20% and 25% of those infected were afflicted with long-COVID symptoms. Her research suggests the numbers of people with long-COVID dropped to about 10% after vaccination roll-outs, which is why she constantly pushes the message that vaccination helps reduce infection severity and duration.
“There’s millions of people now in Canada who’ve been infected with COVID so there are a lot of people suffering from the debilitating symptoms of long-COVID,” Huynh said.
“Science has not been able to find a cure, and also there are still a lot of myths and lack of knowledge that physicians and other health care providers have.”
Like Kutcher, she believes research funding earmarked specifically for long-COVID is desperately needed, as is the creation of a nationwide collaborative group of long-COVID experts. In addition, she said Canada must establish a long-COVID registry like those found in the United Kingdom and many Scandinavian countries.
“We are falling behind. The Trudeau government has been very proactive in investing in how to treat acute COVID, but somehow they totally ignored the long-COVID after,” she said.
“I want people to recognize that this is a true disease, it’s not just psychosomatic, and that they treat the patient afflicted with long-COVID with respect, empathy, and help.”
Huge crisis continually building
For patients struggling with long-COVID, Thursday’s national day of awareness is an opportunity to share with Canadians a key repercussion of the pandemic.
“When you’re talking about COVID, long-COVID should be in that conversation,” Oakville, Ont. resident Susie Goulding said in an interview.
The online Canadian COVID long-haulers support group Goulding started in 2020 has swelled to more than 16,900 members and continues to grow daily. She said there has been a “huge rise” in the number of Atlantic Canadians joining the group in the last two months.
“It’s still catching people by surprise, it’s still not well known, the message hasn’t been broadly spread. We’re hoping this (day) helps create more awareness of what can happen should you contract the virus,” Goulding said.
“It’s not just about deaths and recoveries. Long-COVID is an issue, a mass disabling event, but we’re still having people come to the group that have GPs (general practitioners) that have never heard of long-COVID. Two and a half years into the pandemic, this is a huge problem.”
Goulding also wants to see substantial investments in long-COVID research, a national long-haulers registry, and a crisis response to coordinate interdisciplinary rehabilitation clinics across the country to help long-COVID patients.
“We need to have a better understanding of what long-COVID is definition-wise and what we need to do to encompass this huge crisis that is now at hand and that is continually building.”
While the majority of people struggling with long-COVID tend to be women between the ages of 30 and 64, Goulding said her group’s membership ranges from infants and toddlers to seniors.
“Certainly it does affect children and people of all ages. We have quite a few teenagers in our group and many young people in their twenties who are completely incapacitated,” Goulding said.
“People dealing with issues like PoTS (postural tachycardia syndrome — abnormal increase in heart rate after sitting up or standing) are bedridden, and we’ve had a few people in our group talking about ending their lives and so forth.”
Goulding hopes the national day of awareness reaches not only long-COVID caregivers, families, and medical practitioners, but policy makers and average Canadians.
“We want to see a lot more research being dedicated to this and to figure out the underlying mechanisms of long-COVID. The science has really fallen behind,” Goulding said.
“Now, our science needs to catch up with the growing crisis at hand.”