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.

“Why are they asking for us to review these recommendations when it doesn't seem like they're listening?” Susie Goulding, a Canadian with Long COVID and CEO of the newly formed Long COVID Society told me over the phone.

I asked experts to take a look at the recommendations as well.

“The first thing that strikes me about the recommendations is that they are opposed to current clinical guidelines in Long Covid and ME/CFS,” said Todd Davenport, professor of the physical therapy program at the University of the Pacific. He added the recommendations are too strong given the low level of evidence underpinning them.

Davenport explained that most policymakers and doctors are unlikely to read through the weak underlying evidence and take the recommendations at face value.

“I'm honestly just so flabbergasted,” Jessica DeMars, physiotherapist and owner of BreatheWell Physio told me. “It feels a lot like they decided beforehand what they were going to recommend and then somehow managed to manipulate the study findings ever so slightly, giving themselves an inch to take the mile.”

I took a deep dive into the recommendations and put together insights from patient advocates and experts about the potential harm they pose to people with Long COVID.

The guidelines are open for public comment until November 27th at 11:45 P.M. The group in charge of developing these guidelines may update the recommendations in response to the comments.

Table of Contents

• Recommendation #1: Research the Keto Diet for Prev …

• Recommendation #2: Exercise to Prevent Long COVID

• Recommendation #3: No X-Rays

• Recommendation #5: Using Quality of Life Questionn …

• Recommendation #8: CBT for Post-Exertional Malaise …

• We Can Do Better

Recommendation #1: Research the Keto Diet for Prevention

The first recommendation, which is meant to guide researchers who are studying Long COVID, is made on the basis of a research conference abstract.

A conference abstract is a poster or talk that is presented at a scientific meeting but importantly the data that’s presented has not yet passed scientific peer-review and has not been published in a scientific journal. The recommendations is based off of the incomplete information from the abstract.

“The conference abstract did not provide information on when and how long to start the ketogenic diet,” CAN-PCC writes.

It isn’t clear why this one unpublished study was picked as the basis of a research recommendation. Ketogenic diets are very restrictive, expensive, and many people even in a research setting give up on them making it unlikely that research into the ketogenic diet would translate into real world benefits.

Recommendation #2: Exercise to Prevent Long COVID

The CAN-PCC makes this recommendation on what they admit is “very low certainty” evidence. The researchers developing the guidelines compiled the evidence from clinical trials that tested exercise in people with COVID-19. But none of the studies measured whether participants developed Long COVID.

DeMars and Davenport don’t think the evidence the researchers compiled supports their recommendation.

Davenport explained that exercising during an acute COVID-19 infection is dangerous. Exercise while you’re sick can worsen myocarditis, inflammation of the heart muscles caused by SARS-CoV-2, and increase the risk of a blood clot. Exercise around others “is also an efficient way to spread COVID-19,” he added.

Many people develop post-exertional malaise (PEM) as a result of exercise. PEM is a common symptom of Long COVID and ME/CFS that leads to an energy crash after minimal physical or mental exertion.

“There is a very real risk that we actually increase the number of individuals with Long COVID by asking people to exercise too soon,” said DeMars.

Many people with Long COVID experience their first crash by exerting themselves too soon after an initial infection, leading to worsening symptoms.

“There's also several thousands testimonials from patients who were previously very active and/or athletes who tried to remain active during or shortly after their Covid infection and now they have organ damage and/or developed PEM and/or increased the severity of their symptoms,” Patino said.

None of the studies the researchers used to make this recommendation measured PEM.

The recommendation comes with a note that says that for individuals with post-exertional malaise “exercise or rest recommendations should be made under the supervision and guidance of a health care professional.”

This statement may imply that the CAN-PCC authors believe that exercise may be effective for treating PEM, though it is neither safe nor effective. At the time of publication, the team developing these guidelines has not responded to a request for clarification.

Recommendation #3: No X-Rays

CAN-PCC advises against ordering chest X-rays for people with Long COVID unless they were hospitalized due to their initial infection, based on a “very low certainty” or evidence. They make this recommendation because there is no evidence of doctors using X-rays as a diagnostic test.

Even though a chest X-ray won’t definitively diagnose Long COVID, it provides important clues about a person’s symptoms. Many people with Long COVID develop persistent respiratory issues that affect their quality of life. Researchers have spotted respiratory issues using CT scans in people with Long COVID who weren’t initially hospitalized. CT scans are a medical imaging tool powered by X-rays.

A recent set of clinical guidelines published in The Lancet also recommends a chest X-ray for people with Long COVID who are feeling breathless after exercise. Spotting the problem allows doctors to refer patients to the right specialist for treatment.

Recommendation #5: Using Quality of Life Questionnaires

The recommendation suggests using psychological tests to assess Long COVID patients based on a “very low certainty” of evidence.

In his blog, Brian Hughes, psychologist and professor at Galway University wrote:" “For persons of all genders, anything that reinforces a stereotype of Long COVID as a psychological state risks deflecting patients onto an irrelevant (e.g. psychiatric) treatment pathway and away from appropriate medical care.”

He also raised concerns that doctors will use these psychometric measures more often in in women, who are more likely to develop Long COVID and less likely to be believed by doctors.

The right questionnaires could be helpful though. Better measures like the DePaul Symptom Questionnaire take stock of fatigue and PEM.

Recommendation #8: CBT for Post-Exertional Malaise (PEM)

CBT is a form of therapy that helps people work to change their beliefs. While it can be effective for mental health, there is no evidence that it works for chronic illness or PEM.

As with the other CAN-PCC guidelines, the authors made this recommendation based on “very low certainty” evidence.

Since studies have found that many people with Long COVID develop ME/CFS, another post-viral condition that causes PEM, the guideline’s authors took a look at the evidence of using CBT for people with ME/CFS.

“I can't even believe we are going there,” DeMars said. “Yes people are dealing with newfound mental health issues - primarily due to having to deal with new onset chronic illness and disability, but learning to "think positively" is not going to make their health issues go away.”

Davenport added that the studies the researchers used to arrive at this recommendation didn’t require PEM for diagnosis or use objective measures in the study.

The recommendation also ignores what leading ME experts and patients already know: CBT doesn’t work for ME. The CAN-PCC team failed to engage with any research that exposed methodological flaws in major studies that have assessed CBT as a treatment for ME. The UK’s national health insurer, NICE, advises against the use of CBT for ME.

“By making a suggestion that CBT will somehow improve recovery, [CAN-PCC] pushes the idea that LC is psychosomatic - and blatantly ignores the plethora of data that shows otherwise,” DeMars said.

There is mounting evidence that PEM has a biochemical basis. A viral infection that leads to the development of post-exertional malaise may disrupt the healthy function of mitochondria, which turn nutrients into energy. People with post-exertional malaise also show a build up of lactic acid in the blood which is associated with the severity of symptoms.

“An illness is not going to be cured by thinking happy thoughts,” Goulding said.

These recommendations repeat the same mistakes researchers made with ME. The condition was stigmatized by doctors who pinned it on women being hysterical in the 1980s, shutting down any research into the underlying causes and making it one of the most stigmatized and misunderstood diseases. Even today, many doctors still don’t understand ME and assume that patients aren’t trying hard enough to get moving and improve.

“Recommendation #8 is simply making all the same mistakes in Long Covid that we have made historically in ME/CFS,” Davenport added.

We Can Do Better

Experts and patients are equally frustrated that the guidelines are ignoring existing research and clinical guidelines.

“I think I’m just incredibly disappointed that we seem to be repeating the same mistakes every time a new group of individuals are left chronically ill after an infection,” Sabrina Poirier, a patient advocate and co-founder the ICanCME Research Network told me.

I reached out to the committee developing these recommendations for comment but have not heard back at the time of publication.

“Exercise and CBT are just not appropriate treatments to be pushed and we’ve known that for so long now,” Poirier said. “Why is it that community knowledge and wisdom are still so undervalued in science? Why is the research we have on this topic ignored or explained away?”

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I'm a science and health journalist who is disappointed and fed up with the lack of news coverage surrounding Long COVID, ME/CFS, chronic illness, and disability issues in Canada. I decided to start this newsletter to provide a home for the news stories that don’t get coverage in Canada’s news ecosystem, which lacks outlets for good, science-based reporting.