Arguing long COVID is being downplayed, an advocate has launched this St. John's billboard

This billboard in St. John's, Newfoundland and Labrador featuring a warning about long COVID is the first of a cross-Canada group. (Submitted by Keith Muise)

A new billboard has popped up along a prominent road St. John's, warning people of the long-term effects of COVID-19 and to take precautionary measures.

The Topsail Road sign — which says "Long COVID ruins lives. Mask up" — was organized not by health officials, but a group concerned about the impact of the disease.

"It was just my concern that we didn't have any strategies in place to slow COVID down," said Keith Muise, a Stephenville resident and an organizer with a group called Covid Awareness 2023, which he says has a national membership.

"My son caught COVID in 2021 and since then I've been a very strong supporter of trying to avoid COVID."

Muise says the sign is the first of its kind in the country, and that more will be installed.

After his son contracted the virus, Muise said he noticed changes, like his son forgetting certain words. That led to research and making connections around the world about long COVID, a phrase used to describe symptoms that can persist for months after an infection.

"Then I realized… this is not a mild virus," he told CBC Radio's St. John's Morning Show. "This is something that we need to avoid. So I kind of threw myself into the ring and here we are."

LISTEN | Keith Muise describes his motivation to warn others about long COVID:

Statistics Canada recently released a report on long COVID, and estimated one in nine adult Canadians have experienced long-term COVID-19 symptoms.

That's startling news for Muise.

"So you have people who have had long COVID for literally years and this information is not getting put out there to the public and it's very concerning," he said.

"We really think that there should be an increase in education campaigns and programs and let people know really what's, you know, what's going on."

Muise said there's a lack of government leadership and education right now when it comes to the pandemic.

CBC News requested an interview with Health Minister Tom Osborne about the billboard, but was sent an emailed statement.

Spokesperson Tina Coffey wrote that the department takes its lead from Health Canada on how to manage and support people who have long COVID.

"The department encourages people with prolonged symptoms of COVID-19 to follow-up with a primary health care provider. They would be supported on a case-by-case basis, which may include a referral to specialists or other health care providers," she wrote.

An education gap

Stacey Alexander, a teacher from Corner Brook who has been suffering from long COVID since 2020, said she had seen similar advocacy billboards pop up in other countries like the U.S and U.K.

She is glad to hear of a campaign in her province, too.

"There have been advocacy groups that have gone the billboard route and [are] trying just to get the word out there. Because public health is not necessarily informing the public about the risks of infection," she said.

"I just feel that maybe this might be the way to get the word out there. So I'm really happy to see it's happening here."

Stacey Alexander, who has been suffering from long COVID since the beginning of 2020, is glad to see a long COVID awareness campaign in Newfoundland and Labrador. (CBC)

Alexander said long COVID symptoms manifest in unusual ways all over the body, so people may not think they have it.

At the same time, she said the government hasn't stepped up to warn people about the long-term effects of contracting the virus, including developing autoimmune disorders.

She also voiced her concerns that not enough information is being shared with the public about the impact of multiple COVID-19 infections.

Muise also said long COVID isn't being talked about enough, even though he described it as a "mass disabling event" that has had an impact on the workforce.

He also said it can be hard to diagnose because the symptoms are so wide-ranging, such as persistent coughs and spike in blood pressure.

"It's something that if we educated people, then more people would be on the lookout for it. And we're just not doing that right now," said Muise.

The billboard's timing is meant to align with the holiday season because that's when people gather, he said. He added people think the virus is gone but there are cases across the country.

Keith Muise is concerned that government isn't stepping up to provide more information about long COVID and has joined a group that's spreading awareness. (Submitted by Keith Muise)

According to the Newfoundland and Labrador government's COVID-19 dashboard, there were 132 active cases in the week ending Dec. 2, with two deaths and 15 people in hospital.

"We're just not being warned about it and it just doesn't, you know, it doesn't sit right with myself or you know many others," said Muise. "And people are basically risking their long-term health, in some cases their lives. and really not being given all the information."

The group behind the billboard campaign is looking to post more billboards across the country, said Muise, but a lot of their advocacy will be centered around encouraging governments to start education campaigns.

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