Most people have been too tired to wash their hair, but have you ever been too exhausted for someone else to wash your hair? That has been Julie Pinard’s situation since she developed long COVID 4 years ago. The former vice president of a large manufacturer of electrical accessories now uses most of her extremely limited energy working as a patient partner for the Quebec Minister of Health, Santé Quebec, and independent researchers planning care and research into long COVID and other infection-associated chronic conditions in Quebec.

“I have a very small number of functioning hours per day,” Pinard told Medscape News Canada. “This [interview] is it for today. I will not take a shower. I will not step outdoors. I will not speak to my mother or my children by phone. This is it today.” But she does the work because she knows that patients with long COVID desperately need advocacy.

Healthcare Workers in Denial

A recent survey among Quebec healthcare workers demonstrated that the cumulative risk of developing long COVID from an acute infection is 17% and increases with each infection. The estimated prevalence of long COVID in this population was 5.6%. Other research places the global risk as high as 40% among healthcare workers who have contracted an acute SARS-CoV-2 infection.

Nevertheless, many healthcare workers still don’t believe that long COVID is real, despite dramatically disabling symptoms in people with no preexisting risk factors. “The me before and the me now are such opposites,” said Pinard. “I would swim three mornings a week before going to the office. I was running 40 km. I was traveling every second week. Now I leave my house only every 2-3 months….I was where I was supposed to be [with COVID vaccination]. I was in good health. I wasn’t depressed; I wasn’t anxious.”

Geneviève Bustros-Lussier, MD, is a Quebec family physician who specializes in preventive medicine and public health. She developed severe long COVID 3 years ago after her third SARS-CoV-2 infection. Despite being a doctor and recognizing that she had all the classic symptoms of long COVID — post-exertional malaise, brain fog, shortness of breath, musculoskeletal pain, fatigue, dizziness, chest pain, gastrointestinal distress, hypersensitivity to sound and light, and tachycardia — she struggled to get a diagnosis. “I even had a doctor ask me, ‘What do you need me to tell you to convince you there is nothing wrong with you?’” she told Medscape News Canada.

A cardiologist cleared her for the exercise her physiotherapist recommended, but this was the worst thing she could have done because she had undiagnosed myocarditis. Exercise rapidly worsened her condition. “I went from saying I was getting better to being unable to speak….Just going to the bathroom was difficult.” She had to send her children to her parents.

Big Problem, Few Resources

“We know long COVID exists,” said Bustros-Lussier. “We know it’s devastating. We know a large proportion of the population is affected. Despite that, we’re doing nothing, or very little.” Management of long COVID requires a multidisciplinary approach, but experts on the condition are scarce due to lack of training, education, and even interest. In addition to physicians, Bustros-Lussier sought out physiotherapists, occupational therapists, osteopaths, audiologists, and others with expertise in long COVID, all of whom had long waitlists. Her infectious disease physician who specializes in long COVID is about to retire. Only one cardiologist in Quebec specializes in long COVID.

Despite the lack of curative treatment, finding a knowledgeable care team is crucial. “There is an enormous number of medications we can take to improve our quality of life,” said Bustros-Lussier. These medications have, at the very least, allowed her to raise her children with some degree of normalcy, even if leaving the house remains difficult for her.

Provincial Variation

As limited as care for long COVID is in Quebec, Jennifer Hulme, MD, emergency room (ER) physician with the University Health Network in Toronto, told Medscape News Canada that it is worse in Ontario. She worked in the ER during the early days of the pandemic but, like Bustros-Lussier, caught the SARS-CoV-2 infection that led to long COVID from her school-aged child. Despite having a supportive employer, she had to take unpaid leave until she was well enough to return to work part-time.

The expectation in Ontario is that family doctors will care for patients with long COVID, she said, but many are themselves incapacitated with long COVID, and those who are not lack education and training on how to manage it. “The family doctors I know who were disabled by long COVID often did not know they had long COVID,” said Hulme. They would confuse it with other conditions, such as perimenopause.

Confronting Barriers

Hulme and other interested parties have tried to help build the infrastructure needed to provide care for patients with long COVID, but they have faced many barriers. Although the condition shares many features with fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, and postural orthostatic tachycardia syndrome, guidelines for those conditions could not mention long COVID by provincial government decree. “There are many, many political reasons as to why [long COVID] should not become a big deal,” said Hulme. “There are still little pockets of money for research, but they are very small.”

“Historically, [healthcare workers] have denied the existence of conditions that do not have a biomarker and a treatment,” continued Hulme. “Until we have a biomarker and a treatment, the healthcare community will continue to be unexcited about this….Insurance companies and governments do not want to pay disability or structured paid leave, and healthcare systems do not want to pay their healthcare workers for paid leave. So, it is in nobody’s interest to accept this as a real condition. There is a lot of stigma around [long COVID. Physicians with it] have had a really hard time going off work. They have been made to feel very guilty and [risk] losing their practice.”

The stigma should diminish when a treatment becomes available, but with governments and pharmaceutical companies largely uninterested in funding the necessary research, particularly without a biomarker, the wait may be long. Nevertheless, Pinard was emphatic in her optimism. “I get to see how all the healthcare workers [in the long COVID space] are passionate,” she told Medscape News Canada. “They sacrifice so much to put their research [into long COVID] forward. Sometimes, they invest their own money, their own time….This gives me hope for the future.”

Some good news is that Canada is in the process of developing a registry of patients with long COVID. Resources for Canadian patients with long COVID can be found at longcovidweb.ca and longcovidresourcescanada.ca.