Key points you should know:

• The McMaster GRADE Centre and Cochrane Canada developed more than 100 recommendations for Long COVID. However, experts say some of these guidelines could harm people with Long COVID.
   
• Some recommend controversial and scientifically unsupported therapies for the disease: exercise and cognitive behavioral therapy. These treatments mirror harmful and debunked recommendations for myalgic encephalomyelitis. They also contradict major guidelines.
   
• The majority of pediatric guideline developers came from the same children’s hospital that parents say has psychologized their children’s symptoms. And one committee member has an inconsistently disclosed conflict of interest.
   
• Professor emeritus Paul Garner attempted to influence the advisory committee, according to emails obtained through a public information access request.
   
• The organizations provided only one week for public comments on the recommendations. Many people with Long COVID stopped responding because they felt their voices were not being heard.

Before she got sick, Adriana Patiño was a competitive swimmer. She caught SARS-CoV-2 in 2020 and developed Long COVID, but she decided to keep swimming.

“As an athlete, I am always used to needing to push through everything,” Patiño said. “I definitely think that contributed to my Long COVID getting worse.“

Now, as leader of a patient advocacy organization called Long COVID Canada Collaborative, she is among many patients and researchers pushing back on the newly released Canadian Guidelines for Post-COVID Condition (CAN-PCC). One guideline recommends exercise for people with an acute infection to prevent Long COVID — which isn’t supported by any evidence, and many people with the disease, including Patiño, say it actually increases the risk.

“That’s when it tells you they’re literally not listening to the patients or the research,” she told The Sick Times.