On December 19th, the researchers from Cochrane Canada and the McMaster GRADE Centre released twelve new recommendations for Long COVID. The effort to develop the Canadian Post-COVID Condition (CAN-PCC) recommendations is supported by the Public Health Agency of Canada. If adopted, the recommendations will affect how doctors diagnose and treat Long COVID.

As with their previous guidance, CAN-PCC has a public survey soliciting public comment from patients and experts. The survey closes on January 2nd at 11:45 PM. The major issue with this round of recommendations is the timing — releasing them right before the holidays and expecting experts and patients to read the documents and provide feedback early in the New Year.

Long COVID experts and people with Long COVID criticized the guidelines released last month for proposing potentially harmful and ineffective treatments: Exercise to prevent Long COVID and cognitive behavioral therapy (CBT) to treat post-exertional malaise (PEM). PEM is a common feature of Long COVID causing worsening of symptoms 12-48 hours after mental or physical exertion.

“The timing of this survey was ridiculous,” said Adriana Patino, who leads Long COVID Canada. “I don’t know how they think people can go through that many [recommendations], going into detail, looking at the so-called evidence they [CAN-PCC] provide and give full opinions, whilst dealing with holiday chaos.”

Patino added that many people with Long COVID are managing PEM around the holidays and don’t have a lot of energy to spare.

“The wording of most recommendations is very convoluted, confusing and hard to understand,” she said. “I know that there’s a ‘plain language’ one, but why must they use such wording to make it hard to read and understand what they are actually recommending?”

Other patient advocates did not have time to review the recommendations and other experts I reached out to aren’t checking their emails frequently over the holidays. That makes it very hard to report on whether these guidelines make sense.

Table of Contents

• Recommendation #4: Using a Walking Test to Spot Hy …

• Recommendation #7: No Exercise if You Have PEM, Bu …

• Recommendation #10: Don’t Use Cognitive Screening …

• The Holidays Aren’t An Ideal Time to Ask For Feedb …

Recommendation #4: Using a Walking Test to Spot Hypoxia

Should people who may have Long COVID receive a six-minute walking test to measure whether their lungs are delivering oxygen efficiently to the body? The six-minute walking test is intended to spot interstitial lung disease, another complication of a SARS-CoV-2 infection but it could lead to PEM.

This recommendation puts the onus on patients to determine whether they “place a higher value on identifying potential hypoxia with exertion over risk of post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE) and/or cardiac or respiratory symptom exacerbation.” This conditional recommendation is made based on very low certainty evidence.

But many people with Long COVID don’t know what PEM is, let alone that they may have it. Despite being a common symptom, PEM like Long COVID, is still highly stigmatized by medical professionals. It would make more sense to test for PEM before running additional tests that might trigger a crash and lead to worsening symptoms.

Recommendation #7: No Exercise if You Have PEM, But We Should Research Exercise Anyways

Recommendation #7 suggests exercise for people with Long COVID who don’t have PEM. However, it also recommends researching whether exercise for people with PEM might provide a benefit.

Several experts and patient advocates have hammered home the point that exercise does not work for treating people with PEM, whether they have myalgic encephalomyelitis (ME) or Long COVID. Putting resources into investigating exercise will repeat the mistakes scientists have made trying to study and treat ME and further erode trust between patients and clinicians.

In short, ME 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, opening the door for therapies like exercise and cognitive behavioral therapy that ignored the biological reality of the condition.

Let’s be clear: Overwhelming evidence suggests that PEM has a biochemical basis. Viral infections 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.

The research recommendation ignores what leading experts and patients already know: Exercise doesn’t work and is potentially harmful.

Recommendation #10: Don’t Use Cognitive Screening Tests

Cognitive screening tests are standardized tools used by doctors to measure cognitive decline. They’re a standard tool that neurologists and geriatricians use to measure cognitive decline in older people who are at risk of developing Alzheimer’s or other forms of dementia.

I’ve reported on different forms of cognitive impairment and screening tools for Being Patient, so I’m familiar with some of the research in the area.

The CAN-PCC makes a conditional recommendation against cognitive screening for adults with Long COVID based on a very low certainty of evidence. The authors of the recommendations write that the impairments seen in Long COVID are too subtle for these tests to measure.

I dived into the evidence used to make this conclusion to see if it makes sense.

While the authors acknowledge that cognitive impairment is common among people with Long COVID, they make unsubstantiated statements and misuse existing data to come to their conclusion.

For example, they write that “cognitive impairment may be the consequence of chronic stress and/or depression resulting from social and economic challenges of COVID-19, rather than a result of infection” without any references or citations to back up the statement.

They then write that cognitive impairment from Long COVID improves over time, citing a Global Burden of Disease study that looks at cognitive impairment from various conditions between 1990 and 2021. In a throwaway line midway through that study, the authors wrote that cognitive impairment from COVID-19 improves over time but did not provide any data or references to back up that claim.

Then, to figure out whether cognitive screening is useful, the CAN-PCC looked at a study conducted by the U.S. Preventive Services Task Force (USPSTF) guideline which found that cognitive screening in older adults who might be at risk for dementia didn’t improve their health outcomes.

The CAN-PCC authors wrote that the cognitive screening tools used for dementia can’t identify the subtle cognitive deficits seen in Long COVID. Since they’re expensive, they won’t be useful for Long COVID patients.

It is strange to cite scientific analyses that feature studies where researchers have used cognitive tests to assess cognitive impairment in Long COVID while, on the other hand, claiming these impairments are too mild to be measured.

The recommendation and the evidence document provided by the CAN-PCC may further minimize the severity of cognitive impairment in Long COVID, providing justification to deny screening that could be essential to accessing disability benefits and compensation.

The Holidays Aren’t An Ideal Time to Ask For Feedback

During the holidays, most of us take a well-earned rest and spend time with friends, family, and loved ones. Releasing the new CAN-PCC recommendations during the holiday season means patient advocates and experts don’t have time to respond and weigh in.

By running the survey during this narrow holiday timeframe, CAN-PCC are losing the trust of Canadians who have Long COVID, like Patino.

“They are rushing out recommendations because of the deadline to be done by March, but they are not considering the amount of recommendations per survey, the timing or even providing reliable research to support their arguments,” Patino said. “I know I am not the only one this frustrated, and disappointed.”

I’ve tried my best to highlight some of the recommendations, but there are plenty more that I haven’t covered because I lack the expertise and couldn’t secure experts in time for comment. If you have time before the end-of-day tomorrow, you can fill out the public survey and have your say.

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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.