A Reflection on Long COVID Awareness Day

For many people around the world, this month marks half a decade of living with Long COVID.

To commemorate and bring awareness to the moment, disabled folks, allies, and activists organized Long COVID Awareness events on March 15th around the world. That day, I was one of a few dozen people in front of Queen’s Park in Toronto.

On the lawn, volunteers from the Canadian COVID Society set out a display of pillow cases featuring the stories of people with Long COVID. Altogether, they gathered 200 stories from Canadians, representing the 3.5 million affected with Long COVID since 2020.

“My mom usually feels like she has the worst flu. She’s in pain all the time,” wrote Becca, a 13-year old from North Vancouver.

“I have lost a lot of friends due to my illness,” wrote Amy, a 49-year old Vancouver woman. “I rest most days as I feel too sick to see anyone or do anything.”

Mary Jo Nabuurs, a volunteer at the event, who also works with Ontario School Safety to advocate for better ventilation in schools spoke with me about the event and this moment in time.

“We already know that those suffering with Long COVID often feel invisible and feel like people are leaving them behind,” she said.

The organizers of the event brought respirators and asked all those attending to wear them. However, none of the members of legacy media organizations who showed up to cover the event, bothered to wear respirators — with one cameraperson coughing occasionally.

How can we expect these media organizations to report on Long COVID properly when they don’t protect the disabled folks who come out to these events? Or at the very least, wear the respirators provided for free at the event?

We are living in a moment where the provincial and federal government refuse to acknowledge the ongoing impact of COVID-19.

When I was reporting on the provincial election last month, none of the parties had mentioned any sort of COVID-19 or Long COVID plan, and disappointingly, only the Ontario Liberal Party responded to my requests for comment. Meanwhile, when you click on the COVID-19 button on Doug Ford’s MPP website, it redirects you to a page to help you find mental health support.

“It’s a slap in the face of all the people that have made incredible attempts […] to make things better,” said Nabuurs.

The researchers at the McMaster GRADE Center who are working with the Cochrane Canada, in a federally funded project, to provide guidelines for the condition still call it “Post COVID-19 Condition.” The committee is developing potentially harmful recommendations like encouraging people with acute COVID-19 to exercise or using cognitive-behavioral therapy for treating post-exertional malaise.

Rebecca Lewkowicz, whose son Ethan developed Long COVID, spearheaded the event. When their family caught COVID in 2022, everyone had recovered except Ethan, who was 11 at the time. By the end of May, he started missing school more frequently. He developed heat intolerance, nausea, pain, and other gastrointestinal symptoms.

When doctors couldn’t figure out what was wrong, Lewkowicz said they experienced medical gaslighting. He was told he was anxious, and it took thirteen months until they found doctors who believed and supported the family. Unfortunately, after speaking with many parents of kids with Long COVID, the gaslighting is an often common experience — with many being referred to somatic clinics for mental health treatment.

Millions of kids around the world, like Ethan, are living with Long COVID, and as I have reported elsewhere — there are seldom any pediatric drug trials.

“We have learned to accept this and figure out a way forward, but this isn’t what we wanted for our children,” she added.

Dr. Angela Cheung, a researcher and doctor at the University of Toronto, spoke about the federal research underway to understand and treat Long COVID. Currently, there are no treatments that directly target the disease — only some that alleviate the symptoms.

Cheung is involved in running the RECLAIM trial that aims to evaluate multiple different drugs and treatments for the condition.

Cheung also framed Long COVID as a post-pandemic pandemic — a framing that is unhelpful because the COVID-19 pandemic has never ended. People who catch COVID-19 still risk developing Long COVID. Although some research suggests vaccines might lower the risk, reinfections increase your chances.

Nabuurs rounded out the talks, explaining that “We are only temporarily non-disabled.”

COVID-19 continues to kill and disable Canadians — while support for those who are harmed, in the form of Ontario Works and Ontario Disability Support Program, are stuck well below the poverty line. The Canadian Disability benefit will add a measly $200/month, but will exclude many disabled Canadians who do not quality for the support.

In the meantime, the newly formed Carney government has done away with pesky cabinet positions like the minister for diversity, inclusion and persons with disabilities as well as the minister for women and gender equality and youth.

Long COVID and many other disabilities, including infection associated chronic conditions, are more likely to impact women and non-white Canadians.

The lack of funding for social supports is driving and coercing Canadians, disproportionately women, toward Medical Assistance in Dying. And these changes are all coming as the U.N. Convention on the Rights of Persons with Disabilities is reviewing the urgent concerns raised over MAiD.

Reflecting on the Long COVID Awareness event, I think about the ways that disabled Canadians are being ignored and erased from daily life. The policies that keep them in legislative poverty. And the apathy of politicians and other members of the media who couldn’t mask up and show up for people in their community.

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I'm a science and health journalist who is disappointed and fed up with the lack of news coverage surrounding Long COVID, ME/CFS, chronic illness, and disability issues in Canada. I decided to start this newsletter to provide a home for the news stories that don’t get coverage in Canada’s news ecosystem, which lacks outlets for good, science-based reporting.