Basically what every other country is doing but still disappointing, every single medical and public health institution has failed us, only individual efforts are happening and it's going against strong headwinds.
Postdoctoral Fellow in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://www.postdocs.ubc.ca/ad/55856
Who knew? Thursday is National Long COVID Awareness Day, organized by researchers with the Public Health Agency of Canada to shine a light on the need for better research, and better treatment. https://www.cbc.ca/news/canada/new-...k-help-health-kilfoil-awareness-day-1.6482107
The AQEM (Quebec Association for Myalgic Encephalomyelitis) announces on its website : " Please note that the Quebec Ombudsman has decided to open a collective main file concerning the lack of adequate health and social services for people with myalgic encephalomyelitis. We will try to participate as actively as possible in this investigation in order to properly expose the impact of this lack of services on PWME across Quebec." * link This is interesting news for the defense of the rights of pwme in the Province because : " Le Protecteur du citoyen has been Quebec's ombudsman since 1969. Independent and impartial, it does not report to the Quebec government. It reports to the National Assembly." (Equivalent to House of Commons) Its mission is to : See to it that citizens’ rights are upheld when citizens interact with Québec public services. See to the integrity of public services and be part of the action to improve them. https://protecteurducitoyen.qc.ca/fr/a-propos/roles-et-mandats * Underlined and in bold by me, translated from French
A 'tsunami' of long COVID cases is about to hit, and some say the health-care system isn't ready Canada is said to be lagging behind other countries when it comes to preparation for and research into the illness https://ottawacitizen.com/news/loca...=Social&utm_source=Twitter#Echobox=1654947244
I am annoyed by this framing of "disaster is looming". It whitewashes the last 2 years (and the many decades before) and minimizes the current level, only making it a real problem if it becomes so large that everyone knows someone disabled permanently, or experiences it themselves. What horrible messaging we are seeing all over the place, completely minimizes quality of life and basic ability to function, which indirectly affects survival because of systemic denial and neglect, making everything about either life or death or a problem that can only be acknowledged if and once it becomes so large it massively affects our entire civilization. This is not what's expected of experts. The failure here is staggering.
A team of researchers based at five centres across Ontario have zeroed in on a microscopic abnormality in the way oxygen moves from the lungs and into the blood vessels of long COVID patients in their trial. This abnormality could explain why these patients feel breathless and are unable to perform strenuous activities, says lead researcher Grace Parraga, Tier 1 Canada research chair in lung imaging at Western University’s Schulich School of Medicine & Dentistry. “Those feelings of breathlessness are completely consistent with our finding that we’re not moving the oxygen as efficiently as we should,” she said. Red blood cells are responsible for transporting oxygen from the lungs to the rest of the body. Any disruption in the flow of this oxygen to red blood cells will trigger the brain to say, ‘breathe more’ — resulting in a feeling of breathlessness, Parraga explained. All 34 of the patients who participated in the study were experiencing problems in the level of oxygen being absorbed by their red blood cells. https://globalnews.ca/news/8950820/long-covid-canadian-researchers-causes-study/
Thanks for posting @Mij This article has a bit more detail on the study methods. "Using a functional MRI where patients inhale xenon gas, researchers can see in real-time what it is happening inside the lungs. Preliminary results show symptoms are related to microscopic abnormalities that affect how oxygen is exchanged from the lungs to red blood cells. Having participants inhale the gas while being scanned by the MRI allowed researchers to see how the 500 million air sacs in the lungs deliver oxygen to the blood. In the case of long-COVID patients, the transition of the oxygen was depressed compared to healthy volunteers." https://www.cbc.ca/news/canada/lond...ging-research-at-western-university-1.6504318 Mod note: The research thread on four papers relating to this work is here Persistent 129Xe MRI Pulmonary and CT Vascular abnormalities in ... [PACS] , 2022, Parraga, Matheson (and related papers by Grist, Wild)
Here is the help sheet (produced by INESSS*) for the management of post-covid-19 conditions on fatigue and PEM, for health professionals in Quebec (Province of Canada). The information even mentions ME : https://www.inesss.qc.ca/fileadmin/doc/INESSS/COVID-19/Fiche_Covid_Fatigue_2022VF.pdf “ Post-exertional malaise is a cardinal manifestation of myalgic encephalomyelitis. This condition shares similarities with some clinical aspects of post-COVID-19 conditions; however, uncertainties regarding the pathophysiology of each of these conditions make their bond uncertain." This fact sheet is quite detailed, explains PEM, talks about an exertion threshold (accumulation) that triggers it, lists its possible and many signs and symptoms that arise or worsen, and mentions orthostatic intolerance. As far as the intervention is concerned, these are energy management strategies that are recommended (pacing) : Concrete examples are given to illustrate each item (having groceries delivered, favoring a seated or half-lying position when possible, limiting stimuli, using a wheelchair, a disabled parking permit, obtaining household help, etc.) I can not publish more because there are tables and these are in French. (All excerpts are a translation). * Institut national d'excellence en santé et en services sociaux Note: PEM is really quoted in the plural - " les malaises post-effort "
I posted it a few times before but INESSS published a report about a decade ago detailing the horrible state of neglect for pwME in Quebec. It was quite good, allowed the patients' own testimonies to speak for themselves in many places. It had the usual conclusions about how bad this is and basic recommendations, which are basically the same as what's being done for LC. Nothing happened from it however. And even though it's massively relevant here, it's down the memory hole. It's sad to see how true this is, but just as in anything else, medicine is not special about this, the truth is irrelevant if it's not acknowledged. If people want comforting lies, even medical authorities, they will reject the truth and punish those who speak it. If people aren't willing to accept facts, they just don't. It's just as true in healthcare as anywhere else. Even worse is that this truth is, of course, not accepted, and therefore only "true", not True. Truthiness rules, everywhere, until it doesn't. Very little matters in-between, even millions of lives, as we can plainly see. This is why we don't have nice things. Hell is other people.
A friend of mine called an ambulance last week, severe kidney pain, almost fainted, no ambulance showed up after an hour and a half- 'code zero', in other words you're on your own. Wife drove him to the emergency and he waited 7 hrs to see a doctor. Diagnosed with a kidney stone. Shortage of family doctors in Canada so patients are going to the Emergency for care.
My GP is retiring in the next four to 10 months. She has tried every avenue she can think of to find a doctor to buy her practice but so far she hasn't found anyone. There are approximately 900,000 people in BC alone without a family doctor and it looks like I'm going to be one of those people very soon. My aunt lives in small town NS and her town's only GP retired in April and now they have no one to go to.
We would need to double the number of physicians and nurses to provide even basic adequate care. About 20% of our population doesn't have a GP and our entire system runs through GPs. And I technically have a GP, but that's another issue with discriminated diseases. My parents didn't have a GP for years because their GP, who was my GP and fired me when I got ill, retired and they don't bother with their patient list, they're on their own. My father is 75. Didn't have a GP for I think 3 years. Canadian healthcare has gotten incredibly dysfunctional. But that would mean lower salaries so it's not happening. So instead it will basically be ongoing degradation of services until medical AIs completely transform the profession. Ironic, that a human problem will be solved by technology, not even because that problem is too hard, it's just dumb old human nature. But there is no human solution here, the system is paralyzed. And all that was just as true before the pandemic. It's only gotten worse since, but it was already crumbling under its own weight.
My GP of 36 years retired last October and I'm very grateful she found a replacement. Having a GP in Canada is golden now. I heard about a group of nurses from Québec who left their jobs and went to work in S. California.
The biggest problem with getting new doctors to work in BC as a GP in a family practice is that they only get paid $31 per average visit with a patient. So if a patient's visit runs longer and takes, say, 30 minutes of the doctor's time, the doctor still only gets paid $31.00 for the half hour. If the gov't wants to fix the problem, they need to start paying GPs a salary and do away with paying per patient per visit.
Burnt-out Canadian nurses are shipping out for better working conditions and pay “I am getting to do what I love and getting paid well for it,” Ms. Hassan says. “What is the incentive to come to Canada and work in the health care sector right now? Nothing.” https://www.theglobeandmail.com/bus...m_campaign=nurses_canada&utm_id=nurses_canada
[There's probably not a lot of point in making a new thread for this.] McMaster Uni is recruiting on Reddit for a 'CFS study': Further information on the study: As pointed out by a commenter on Reddit:
