McMaster University researchers create guidelines to help COVID-19 longhaulers

Researchers at McMaster University say they've created Canada's first-ever comprehensive guidelines for diagnosing, managing, preventing, and treating post COVID-19 condition (PCC), more commonly known as long COVID.

According to the researchers, the Canadian Guidelines for Post COVID-19 Condition (CAN-PCC) provide clear, evidence-based recommendations to educate and help patients, health-care professionals, and policymakers navigate the still relatively new condition.

The guidelines consist of approximately 100 recommendations related to PCC, broken down into six key categories:

• Prevention.
• Testing, identification and diagnosis.
• Clinical and non-clinical interventions.
• Neurological and psychiatric topics.
• Pediatric and adolescent topics.
• Health systems and social support.

The recommendations cover a broad range of important topics. For example, CAN-PCC suggests using indoor ventilation and air filtration to prevent COVID-19 and thereby PCC, metformin to treat people with PCC, and care navigators to support people with PCC. 

"These guidelines are designed to provide and implement actionable recommendations that will help health-care professionals offer the best possible care to patients experiencing long COVID," said Robby Nieuwlaat, co-lead on the project.

"They also empower patients with the information and tools they need to advocate for their health and ensure they receive the necessary support and treatment."

Nieuwlaat is an associate professor with McMaster's Department of Health Research Methods, Evidence, and Impact and director of the Michael G. DeGroote Cochrane Canada Centre.

It's estimated that PCC affects more than one million Canadians, the researchers say, adding that long COVID isn't a condition restricted to people who experienced severe outcomes from COVID-19 infection. They say people who experienced a mild case of COVID-19 or who were initially asymptomatic could still develop long COVID.

Symptoms can vary, with more than 200 having been reported in association with PCC, with some of the most common being fatigue, shortness of breath and brain fog, which can impact memory, concentration, and focus. Symptoms may be persistent or episodic and may worsen depending on circumstances.

In 2023, McMaster received a $9 million financial contribution from the Public Health Agency of Canada to develop the guidelines in collaboration with people with lived PCC experience, health-care professionals, policymakers, as well as international experts, together referred to as the CAN-PCC Collaborative.

An up-to-date platform for easy to find evidence 

Holger Schünemann, professor of clinical epidemiology and of medicine at the university, told CBC Hamilton that as it is a relatively new condition, "these guidelines will support those living with long COVID," as there are now guidelines they can bring to the attention of health-care professionals, "who may not have an understanding of this complex, multi-system illness that has devastating impacts on quality of life."

For health-care providers, Schünemann said the guidelines provide an up-to-date platform for easy to find evidence. 

"Canadian health-care providers will have evidence-based recommendations available to them to support shared decision-making, taking into consideration a patient's values and preferences, the best available scientific evidence and their own clinical judgment," he said.

Guidelines 'will be very helpful' to patients and doctors

Susie Goulding, founder of COVID Long-Haulers Support Group Canada, said her group is grateful to the McMaster team for undertaking this extensive project. 

"Although these recommendations are coming early in the game as research is just getting started, they will be very helpful to many patients and doctors alike," Goulding told CBC Hamilton.

"From a patient's perspective, to have recognition of our debilitating symptoms we live with daily is a win in itself.

"We're glad that our medical practitioners will have access to guidelines at a glance and we are hopeful that this will lead to better care for this vile condition that is destroying the lives of millions of Canadians," added Goulding, who's also CEO of The Long Covid Society, a not-for-profit dedicated to long COVID.

Goulding, a COVID-19 long-hauler, previously told CBC News she suffered from severe neurological and gastronomic issues related to the novel coronavirus for nearly a year.

"I thought I was gonna die. One night, I called my doctor and said, 'I think I'm gonna die,'" Goulding said.

She said a lack of answers from health officials forced her to create the COVID Long Haulers Support Group of Canada — a Facebook group that connects COVID-19 long-haulers.

Canada's chief public health officer, Theresa Tam, said the creation of the Canadian Guidelines for Post COVID-19 Condition "marks a significant milestone in our ongoing efforts to address the long-term impacts of COVID-19." 

"These guidelines will serve as a crucial resource to support those living with this condition as well as the health professionals that provide the care that best fit their needs," Tam added.

More funding needed: Schünemann

Meanwhile, Schünemann said the research team needs more funding to continue its work. 

"Funding has stopped but evidence is continuing to emerge and long COVID will continue to exist," he told CBC News. 

"We have created a wonderful and — again — unique infrastructure that the government and other funders should be proud of and take advantage of… What is needed is continued funding to maintain this work." 

Schünemann said that with research in the U.S. shutting down, it is more needed than ever to keep evidence-based guidelines updated with new and emerging evidence, as many new studies are underway. 

U.S. federal health officials said Tuesday they are pulling back $11.4 billion in COVID-19-related funds for state and local public health departments and other health organizations throughout the nation.

"The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago," the U.S. Department of Health and Human Services said in a statement.