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 : * 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.
This is excellent reporting from CTV news, primarily about long-Covid but it also covers ME widely. https://www.ctvnews.ca/health/coron...lded-many-answers-scientific-review-1.6235227
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
I'm not sure how an activity program can be both structured and symptom guided. But at least they advise activity levels avoiding PEM.
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.
Ontario launches fee code for doctors treating long COVID and one researcher says 'it's a big deal' https://www.cbc.ca/news/canada/toronto/long-covid-ontario-1.6728592
After a drop in recent months, I'm seeing a bit more coverage of LC lately based on growing evidence and the impact on the workforce. So if there are long haulers on here: https://twitter.com/user/status/1626700802554269696
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 The author of the tweet: https://cumming.ucalgary.ca/labs/calgary-autonomic-investigation/pots-long-covid He has never mentioned M.E in any of his tweets.
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.
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
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. 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
Hahaha we are so fucked. 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.
https://twitter.com/user/status/1485650080942243845 Is this one of them? (This is a long thread) IIRC he has talked about ME/CFS a lot. ETA: https://twitter.com/user/status/1396959237696282630
No Simon Decary is a PhD in physiotherapy from Quebec and he is well versed in the ME issue. He is an ally.
"The funding, from the Canadian Institutes of Health Research, will allow Cheung to work with about 300 researchers, clinicians and people with long COVID to develop diagnostics, treatments and rehabilitation". https://www.thestar.com/life/health...my-and-be-mass-disabling-event-in-canada.html Zero mention of M.E/CFS.
