Researchers involved in the organizations Cochrane Canada and the McMaster GRADE Centre at McMaster University are developing guidelines to prevent and treat Long COVID in Canada. Their effort is supported by the Public Health Agency of Canada and their recommendations would likely have major sway in the way Long COVID is treated if adopted.

Every month, they release new recommendations and provide an opportunity for public comment. On November 20th, the group released a new set of Canadian Post-COVID Condition (CAN-PCC) recommendations which propose harmful and ineffective treatments: Exercise to prevent Long COVID and cognitive behavioral therapy (CBT) to treat post-exertional malaise (PEM).

The recommendations are made on the basis of what CAN-PCC describes as “very low certainty” evidence and disregard the lived experience of patients living with Long COVID and similar conditions like myalgic encephalomyelitis (ME/CFS).

Several patient advocates and groups have mobilized in response. Adriana Patino, who leads Long COVID Canada said that group members were shocked and angered by the recommendations who are losing trust in the guidelines as the authors “are not following the most recent research nor listening to the patients’ voices.”

Many don’t want to comment on the recommendations any longer because they feel they aren’t being listened to in the first place.