Province launches long COVID web page after N.B. group releases government documents

The New Brunswick government has launched a new web page about post COVID-19 condition, more commonly known as long COVID, including a list of symptoms, self-care tips for people suffering from the condition, as well as advice for their loved ones. 

It comes on the heels of the PoP (Protect our Province) NB advocacy group releasing hundreds of pages of government documents and emails regarding long COVID, obtained through a right to information request.

"Pop NB … discovered that the government of New Brunswick and Public Health have been receiving information about long COVID since July of 2020," said Cheryl Johnson, a Saint John-based member of the group.

"And the Public Health Agency of Canada defined long COVID in August 2021. So this is not a new condition. There is lots of information on it."

But that information was never shared with the public, she said — even when all protective COVID-19 measures, such as masking, were lifted in March.

"Public Health of New Brunswick has said, 'assess your own risk,' but up until this weekend we were not provided any information on long COVID, so how could people assess their own risk when they weren't even given information by the government about an ongoing, lasting, debilitating disease that can result from a COVID infection?"

Department of Health spokesperson Adam Bowie said post COVID-19 condition is still "an actively researched field of study.

"Public Health officials believe in responsible government, which means reviewing and vetting this information, and ensuring it is rigorously tested and relevant for the public," he said in an emailed statement.

The most meaningful information is shared with the public when it's deemed relevant by Public Health officials.- Adam Bowie, Department of Health spokesperson

"The most meaningful information is shared with the public when it's deemed relevant by Public Health officials."

The Public Health Agency of Canada updated its guidance for the condition on Oct. 20, he said, and the province adopted that definition.

The web page content was approved by department senior management on Nov. 4, according to Bowie — before PoP NB posted its RTI documents. It was then sent for translation.

"The final versions of the web content, in both languages, were approved on Nov. 24 and posted shortly afterwards," he said.

Asked why the department did not announce the new web page and hasn't been promoting it, Bowie did not respond.

Number affected unclear

Long COVID is a catch-all term for a range of post-infection health impacts, such as fatigue, brain fog and sleep problems, for weeks, months or years.

"There is a small number of people who continue to have COVID-19 symptoms for more than 12 weeks," the government's new web page on the COVID-19 website states. "This sickness is called Post COVID-19 condition."

It's unclear how many New Brunswickers suffer from long COVID because the province doesn't track it.

"It should be noted that because there's no identified diagnostic marker for the condition, it's unlikely any jurisdiction can provide accurate numbers of patients affected by Post COVID-19 condition," said Bowie. "As you know, many COVID infections go unreported, and the diagnosis of this condition is one that involves ruling out other issues, and may take time."

A Statistics Canada survey suggests 25.8 per cent of Canadian adults who contracted COVID-19 before December 2021 had symptoms at least three months after their infection.

Among those whose cases date from December 2021 onward, 10.5 per cent reported symptoms three months or more post-infection.

'[OK] to feel scared or worried'

Some of the symptoms include: feeling very tired, difficulty breathing, difficulty thinking or focusing, difficulty sleeping or staying asleep, muscle or joint pain, loss of smell or taste, and feeling anxious, sad, or depressed.

"It's [OK] to feel scared or worried if you still feel sick from COVID-19," the web page says. "Post COVID-19 condition has a wide range of symptoms and everyone's experience is different."

Among the "tips to try": people who feel tired should pace themselves, take a break when they start to feel tired, and be patient and kind with themselves; while those with brain fog should get enough sleep, break projects into smaller tasks so they're easier to finish, and work in a quiet area.

Family and friends of people with long COVID, who may feel "worried and helpless," can help support and care for them, the web page advises. They can listen to how their ailing loved ones feel, for example, tell them they believe them, and ask what they can do for them so they can rest.

Studies dating back to 2020

Until now, New Brunswickers have not been informed of the existence, prevalence, or impact of long COVID through Public Health — the office responsible for disseminating that information, contends PoP NB.

Documents obtained by the group and made public on its website reveal that on Feb. 24, when the government told people the pandemic was now going to be managed through individualized risk assessment, it failed to inform them or the media about the scientific information it had on the long term complications of COVID-19 infection.

As early as July 2020, just a few months into the pandemic, at least 13 members of the Department of Health — as well as dozens of health officials from other provincial governments and the federal government — received information on what was then known as persistent COVID-19 symptomatology.

Studies from Italy, the U.S. and the U.K. showed a minimum of 10 per cent of COVID-19 patients continued experiencing COVID-19-related issues, the documents reveal.

Since May 2021, Public Health has been receiving Public Health Agency of Canada reports showing evidence of long COVID causing long-term health outcomes involving the cardiovascular, pulmonary, hematologic, renal, gastrointestinal, and central nervous systems, among other health effects.

'Policy responses need to take into account' long COVID

In August 2021, two weeks after New Brunswick first removed protective COVID measures, Public Health was in possession of evidence that showed 80 per cent of infected patients developed one or more long-term symptom, according to the group.

Persistent effects of COVID included CT abnormalities, abnormal lung function, fatigue and shortness of breath.

"Policy responses need to take into account the complexity of long COVID. Public Health response to COVID-19 needs to adequately address long-term effects of SARS-CoV-2 infection," a report from the federal office of the chief science officer advised. "Strategies must be formulated to provide integrated care to those suffering from this chronic long-term illness."

Among the RTI documents are pleas for help from sufferers, including a copy of a letter to then-health minister Dorothy Shephard from a sufferer.

"My symptoms are often debilitating and my life has been put on hold even though I am no longer infected with COVID. I am not alone as there are many other New Brunswickers suffering along with me.

"We need help and a long COVID clinic in New Brunswick. I am not asking for anything more than what other Canadians have access to in their home provinces."

Compiling info for web page for 5 months

Public Health has been "studying the phenomenon of post COVID-19 condition … over the course of the pandemic, and reviews information from a variety of sources as it emerges," according to the Department of Health spokesperson. This includes academic studies from around the world, as well as data collected in the province, said Bowie.

In June 2022, the department established a formal steering committee to review data and recommendations from other provinces, he said.

"Since then, the department has been compiling information about post COVID-19 condition for publication on the GNB website to better inform the public and to provide self-care information."

The province's web page advises anyone struggling with post COVID-19 symptoms who needs additional help to contact their health-care provider.

They can also seek help from the hospital system, noted Bowie.

In addition, the regional health authorities are working with the department "to assess where care pathways may need strengthening and to adapt existing care models (if required) based on any emerging evidence-based research findings in this area," he said.

'Good start'

Pop NB member Johnson called the web page a "good start." But more information is needed, she said.

The latest federal information suggests 15 per cent of COVID infections result in long COVID, said Johnson, pointing to the Public Health Agency of Canada website. "So that's one in eight" who have lasting symptoms.

Of those, "20 per cent have their daily activities impacted and 50 per cent of those people have their symptoms last longer than a year."

That type of information should be on the provincial site, said Johnson, "so people understand the severity of this illness."

Johnson says she has loved ones living with long COVID. "They've been unable to work. They've been unable to pay a lot of their bills. They're now living in debt, they're facing financial hardship. It's really challenging."

The government should be doing more to prevent long COVID by preventing COVID infections and doing more to help those who are suffering from long COVID, said Johnson, noting a number of other provinces offer long COVID clinics.

"Health officials will continue to monitor the impacts of post COVID-19 condition in the days, months and years ahead," the department spokesperson said.