News from Canada

Here is an article on Long Covid appeared in the Châteauguay newspaper (Quebec) Link . It talks about the first research and care project for patients which inspired the opening of several other Long Covid Clinics later by the provincial government. The initial project was carried out in collaboration with the University of Sherbrooke, where professor and physiotherapist Simon Décary, whom we know, teaches and does research. In short, the article includes 2 testimonials, mentions PEM and even the AQEM (Association québécoise de l'encéphalomyélite myalgique) as a resource for pwLCs who are on the waiting lists for these clinics. The distress experienced by some pwLCs of no longer understanding what is happening to them and being left without help is also underlined. Some excerpts :

" I was working full time, plus a lot of overtime to fill shifts. Then, overnight, I was no longer able. It is as if I had been put in the body of a 95-year-old person, who has no more strength, who has no more energy. "
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For Ms Rouleau, the symptoms include pain “which can go from zero to ten in three seconds” and the complete loss of taste and smell. Three to four times a week, she experiences mental fog – days when she “doesn’t have access to her brain properly.
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" Post-COVID syndrome is defined by symptoms that persist 12 weeks after infection and cannot be explained by other health conditions. These vary for each person. The most common, Post-exertional malaise, consists of an aggravation of COVID symptoms, including intense fatigue, for several days after having made minimal physical, cognitive or emotional effort ", explains Annik Jobin, senior advisor at the innovation and the development of clinical tools at the CISSSMO.
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She specifies that Long COVID is a disease for which there is no cure at the moment. Treatment involves helping patients better understand and manage their symptoms.
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* All excerpts are translations
 
It's not disastrously wrong, but the Canadian Medical Association is still framing pacing as a treatment. The failure is moving towards acknowledging the facts, but using them wrong. I see this everywhere now that it's not reflexively dismissed: they acknowledge it, but incorrectly. As long as pacing is framed as a treatment to physicians, they will think it's an effective treatment, they will view it wrong and learn the wrong lessons from it.

Fatigue and postexertional malaise associated with long COVID should be treated with titrated structured activity and energy conservation strategies1
To avoid precipitating postexertional malaise, patients should be advised to begin a structured and symptom-guided return to activity program, tailored to their severity of fatigue. The 4 Ps (pacing; prioritizing which activities need to get done on specific days and which activities can be postponed; positioning to modify activities to make them easier to perform [e.g., while sitting]; and planning) is a helpful framework to educate people about how to apply physical, emotional and cognitive energy conservation strategies.1

Fatigue is the most common symptom of long COVID
Fatigue is associated with diminished activity tolerance and postexertional malaise and symptom exacerbation. Providers should assess its frequency, severity, duration, impact, and alleviating and exacerbating factors (physical, cognitive and psychological), as well as sleep hygiene and effect on daily activities. To rule out other causes, a comprehensive history, physical examination and routine bloodwork including hemoglobin and thyroid-stimulating hormone are important.1​

https://www.cmaj.ca/content/195/2/E76

It's impossible to make progress when every tiny step forward is immediately cancelled by an equal step backward, gets framed incorrectly and ends up failing the same old way as before.
 
rvallee said:
Fatigue and postexertional malaise associated with long COVID should be treated with titrated structured activity and energy conservation strategies1
To avoid precipitating postexertional malaise, patients should be advised to begin a structured and symptom-guided return to activity program, tailored to their severity of fatigue. The 4 Ps (pacing; prioritizing which activities need to get done on specific days and which activities can be postponed; positioning to modify activities to make them easier to perform [e.g., while sitting]; and planning) is a helpful framework to educate people about how to apply physical, emotional and cognitive energy conservation strategies.1

Fatigue is the most common symptom of long COVID
Fatigue is associated with diminished activity tolerance and postexertional malaise and symptom exacerbation. Providers should assess its frequency, severity, duration, impact, and alleviating and exacerbating factors (physical, cognitive and psychological), as well as sleep hygiene and effect on daily activities. To rule out other causes, a comprehensive history, physical examination and routine bloodwork including hemoglobin and thyroid-stimulating hormone are important.1​

https://www.cmaj.ca/content/195/2/E76
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Adding some extra information to help folks navigate this issue of the Canadian Medical Association Journal.

The first paragraph that's quoted is from this section - https://www.cmaj.ca/content/195/2/E80

The second paragraph is from this section (matches link in post) - https://www.cmaj.ca/content/195/2/E76

And here's a link to the table of contents - https://www.cmaj.ca/content/195/2
 
Trish said:
I'm not sure how an activity program can be both structured and symptom guided. But at least they advise activity levels avoiding PEM.
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That's my concern. They say the right things, but they say them in a way that can still be interpreted wrong. The vast majority of GPs reading this will think it's nothing to worry about and go on with gradual rehabilitation, it's too lacking in details and facts. Very few readers will get the scale and depth of this issue, it's still very non-comital.
 
Anyone else noticing the trend where it's all POTS, and only the tachy part, and the broader issue of dysautonomia is being drowned out entirely?

Because the way it looks like, it would be only POTS, and only about the tachy part, and everything else would be ignored like it doesn't exist. This is basically lateral progress at best if they only obsess over pulse rate at the exclusion of everything else.

For sure it could still help some people, but this is one sure way to miss so much it may as well be nothing at all.
 
rvallee said:
Anyone else noticing the trend where it's all POTS, and only the tachy part, and the broader issue of dysautonomia is being drowned out entirely?

Because the way it looks like, it would be only POTS, and only about the tachy part, and everything else would be ignored like it doesn't exist. This is basically lateral progress at best if they only obsess over pulse rate at the exclusion of everything else.

For sure it could still help some people, but this is one sure way to miss so much it may as well be nothing at all.
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And I suspect not even everyone who thinks they have POTS does because it requires a lack of orthostatic hypotension. Which requires a test.

Until I adjusted it, the MEpedia page for POTS didn't mention it, only the abnormal heart rate criterion.
 
From the previous article, the Canadian Government is investing 20 million for research on Post-Covid Conditions (PCC) and 9 million to develop Clinical Practice Guidelines.

The Long COVID Web research network will be led by Dr. Angela Cheung, a clinician and researcher at University Health Network and the University of Toronto. Together with her co-leads, Dr. Simon Décary at Université de Sherbrooke, Dr. Adeera Levin at the University of British Columbia, and Dr. Piush Mandhane at the University of Alberta, Dr. Cheung will work with more than 300 researchers, clinicians, people with lived experience of COVID-19, partners and representatives from Indigenous communities across the country to develop accurate diagnostics, treatments, and rehabilitation strategies for PCC. This work will deliver real and lasting improvements in the lives of those with PCC through evidence-based and standardized clinical practices that will reduce the socioeconomic impact of this disability.
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Cochrane Canada and GRADE centres at McMaster University will develop, disseminate, and evaluate six evidence-based health guidelines on PCC that will focus on the Canadian context. These guidelines, to be published early in 2024, aim to cover PCC identification and prevention, assessment, management, follow-up, and monitoring of people with PCC. A focus of these evidence-based guidelines will be on developing easy to use tools to bring evidence to practice with special attention on equity deserving populations. The team will be led by Dr. Holger Schünemann, a clinician and researcher, with his co-lead Dr. Robby Nieuwlaat and a team of experts in the field at McMaster University.
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I have some concerns, because although I don't know these 2 scientists, Dr. Holger Schünemann and Dr. Robby Nieuwlaat, who will be leading this last part on the development of guidelines, they work at McMaster University (Hamilton, Ontario)... where we already know that some researchers are biased by the BPS approach. A quick search did not reveal more about them. Likewise, I must admit that knowing that Cochrane Canada will also be involved does not inspire much confidence in me. Hope my concerns turn out to be unfounded...

Note: Prof. Simon Décary is part of the research network (Long COVID Web), not the guideline development team.

* Added precision
 
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Mij said:
Government of Canada invests new funding for post COVID-19 condition, in line with recommendations from the Chief Science Advisor’s report

https://www.canada.ca/en/public-hea...ns-from-the-chief-science-advisors-report.htm
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Cochrane Canada and GRADE centres at McMaster University to develop and disseminate guidelines over a three-year period
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Hahaha we are so fucked.
This work will deliver real and lasting improvements in the lives of those with PCC through evidence-based and standardized clinical practices that will reduce the socioeconomic impact of this disability.
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All about money. The true EBM way.

Basically, we still have to solve this on our own. No help is coming, they're still giving the problem to the problem. What a total disaster.
 
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