Experts Criticize New Canadian Long COVID Guidelines for Inconsistencies and Lack of Clarity

The new CAN-PCC guidelines on Long COVID have raised a firestorm of criticism from experts and patient advocates. The extensive guidelines, created by the McMaster GRADE Centre and Cochrane Canada, are packed with more than 100 recommendations spanning six categories, including prevention, testing, diagnosis, and interventions. National experts have called them “contradictory” and “deeply concerning.”…

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Experts Criticize New Canadian Long COVID Guidelines for Inconsistencies and Lack of Clarity

The new CAN-PCC guidelines on Long COVID have raised a firestorm of criticism from experts and patient advocates. The extensive guidelines, created by the McMaster GRADE Centre and Cochrane Canada, are packed with more than 100 recommendations spanning six categories, including prevention, testing, diagnosis, and interventions. National experts have called them “contradictory” and “deeply concerning.” This has serious implications as to their effectiveness and how they’ll affect quality patient care in Canada.

Toronto-based science communicator and health writer Simon Spichak, who has a Master’s degree in neuroscience, raised another critical concern. Despite these guidelines to provide standardized care for Long COVID, they are insufficient in assisting healthcare providers to recognize post-exertional malaise (PEM), a challenging symptom most patients experience immensely. What’s in these guidelines is extremely important. They may have the power to influence provincial rehabilitation programs and affect how Long COVID is treated at the national level in Canada.

Despite the comprehensive nature of the recommendations, critics argue that the public was given only seven days to respond to the draft guidelines. We are worried that this short window will result in a lack of inclusive patient experience informing policies that have real impact on the lives of patients. Dr. Garner is another leading voice in this contentious debate. As a widely recognized proponent of Long COVID awareness and advocacy, Chafee has been maligned for supposedly purloining into patient activist circles and weaponizing their discourse.

Overview of CAN-PCC Guidelines

The CAN-PCC guidelines consist of more than 100 recommendations organized into six categories: prevention, testing, identification, and diagnosis, clinical and non-clinical interventions, neurological and psychiatric topics, pediatric and adolescent topics, and health systems and social support. All of these categories are intended to meet the complex challenges of treating and rehabilitating Long COVID.

Some experts argue that the guidelines do not sufficiently clarify how healthcare providers should screen for PEM in clinical settings. Todd Davenport, a professor of physical therapy, recommended against the proposed tools. He thinks they probably don’t account for the nuances of Long COVID symptoms.

“I’d even downgrade it more,” – Todd Davenport

Recent research suggests that PEM cannot just be chalked up to “muscle deconditioning”. This issues previously held beliefs about what drives this disorder. To help recognize PEM, the guidelines strongly recommend using the DePaul Symptom Questionnaire–Post-Exertional Malaise. Critics such as Davenport point to a history of cultural inaccuracy with cognitive behavioral therapy (CBT). At the same time, they characterize its effectiveness as having a “checkered history” on treating such conditions.

Patient Advocacy and Response

Patient advocacy groups are speaking out against the CAN-PCC guidelines. In particular, they fear the effects that any such change would have on children and adolescents. A letter from worried parents and pediatric clinicians specifically cited how the recommendations might solidify barriers already faced by a vulnerable patient population. They are concerned that their children are going to encounter a lack of understanding of their symptoms.

“This recommendation reinforces existing barriers that our children experience in doctor’s offices across Canada. Specifically, that our children’s symptoms are ‘all in their head,’” – Letter from concerned parents and clinicians about CAN-PCC pediatric guidelines

Claire Higham, who leads Long COVID Advocacy in the U.K., criticized the recommended treatments as outdated, stating that they are “the same as what have been historically given for ME.” Such sentiments reflect a deeper frustration from within the Long COVID community with the lack of institutional response to their needs.

Patiño, who administers the online patient support group, abhorred Dr. Garner’s behavior. They argue that he unconstitutionally infiltrated the group. They shared how these acts destroy the trust and safety that’s necessary in spaces of support.

“We are deeply troubled that Dr. Garner may have infiltrated our private patient support group, only to judge and criticize what patients say in their most vulnerable moments,” – Patiño and the other five administrators of the group that was infiltrated

Controversies and Conflicts of Interest

Even as these conversations have unfolded, accusations of conflicts of interest on the guideline development team have continued to emerge. One subcommittee member in particular was singled out for his repeated failure to disclose potential conflicts. That has fueled a call for more transparency. Folks want to believe that when the recommendations are rolled out, they’re looking out for patients’ best interest without all of these outside forces.

The spokesperson for CAN-PCC responded robustly to defend that process. In their response to comments, they stressed that the guideline development group was overwhelmed by the volume of responses submitted during the seven-day critique period and thoroughly considered every piece of feedback.

“The large number of responses we received, which we appreciated and carefully evaluated with the entire guideline development group, speaks against the claim that the time was too short,” – CAN-PCC spokesperson

Sabrina Poirier, an advocate for Long COVID patients, described some elements of the guidelines as “incredibly privileged, audacious, and out of touch with the science and lived experience of Long COVID or ME.” Her remarks shed light on an increasingly desperate situation for advocates. They call to the fore the urgent need for treatment approaches that are more holistic and compassionate.

Natasha Laurent Avatar