From the tweet: https://science.gc.ca/site/science/...e-know-what-we-dont-know-and-framework-action I've only read the first couple of pages, but it looks sensible and helpful. There is mention of biomedical research. I found the document encouraging. I didn't see a mention of ME/CFS specifically (the illness that people dare not speak its name), but there are references to 'similar post-infection chronic conditions'.
There many good things in there. And good people. From the looks of it, it's just the usual power struggles behind closed doors. Many efforts have failed this way, someone with a foot massive enough to sway everyone put it down and said "NO!", likely more than someone. It basically always goes the same way, with the NICE guidelines pretty much being the only exception where the foot wasn't quite able to affect the outcomes, but is still more than heavy enough to make it all irrelevant in real life. But this process is still open and looks possible to influence. That's more than can be said about all the others. The extreme secrecy of everything medical is going to be massively changed, it makes accountability impossible. And I doubt this is a funny coincidence.
Lessons for Long COVID from Myalgic Encephalomyelitis (ME) care Sympathetic letter in the Canadian Medical Association Journal. Recommends pacing https://www.cmaj.ca/content/lessons-long-covid-myalgic-encephalomyelitis-me-care
Twitter thread documenting some information packets given to medical authorities showing they were well aware of Long Covid by November 2021. And said nothing. And did nothing. It's not an impressive display of knowledge but it's at least 10x more than enough to not ignore this. They ignored it. Of course governments cannot be sued for anything they do here, which is why they ignored it. How does it go again? Oh, yeah: "A new car built by my company leaves somewhere traveling at 60 mph. The rear differential locks up. The car crashes and burns with everyone trapped inside. Now, should we initiate a recall? Take the number of vehicles in the field, A, multiply by the probable rate of failure, B, multiply by the average out-of-court settlement, C. A times B times C equals X. If X is less than the cost of a recall, we don't do one." They did not, however, accurately count the costs involved here. Because no one ever bothered to do anything with chronic illness and so they don't know how to count this. Oops. https://twitter.com/user/status/1636943425478991873
Shame on LifeLabs https://www.lifelabs.com/long-covid-assessment-testing/?twclid=2-3xe5kevpub15mwuw4vcmcrr48
Good article (French, Radio-Canada) concerning the repercussions of Long Covid and denouncing the difficulty of having access to a basic disability pension in Quebec (RRQ). It includes several testimonials from pwLC, EM is mentioned and Prof. Simon Décary is interviewed. The fact that there is currently no treatment is also specified. " Professor Simon Décary, Scientific Co-Director of the Pan-Canadian Research Network on Long COVID, explains: "We are talking about 50% of people who have long COVID [for one to two years] who could have a clinical profile similar or identical to myalgic encephalomyelitis." " The rigidity of Retraite Québec denounced Carrie Anna McGinn manages her Quebec Long COVID group on Facebook with heart and determination. The group has 2,500 members, a number that is growing rapidly. In her view, the refusals of Retraite Québec to grant last resort benefits are unacceptable. “I am outraged, then really, there, I am angry that we refuse minimal and necessary benefits to cover the costs [...] of living for people who are so seriously ill." " Professor Simon Décary wonders: " What are we doing to support (them) financially while we explore treatment options ? " According to him, the lack of financial support for people with long-term COVID leaves them in very great vulnerability. This highlights flaws in the system, he says. " " Retraite Québec said that, among those who suffer from long-term COVID, the vast majority of applications have been accepted. Under a Freedom of Information request, La Facture * attempted to obtain figures from the agency, but was met with a refusal. Carrie Anna McGinn says those who were accepted, it has been difficult ; often revisions, must have built up large folder and have plenty of evidence to support their request." * Title of the journalistic program from which the article is taken
Just saw Jason Busse liked two teets announcing this, so that's not a good sign: https://twitter.com/user/status/1634204853021954052 https://twitter.com/user/status/1634229685050658817
Fee Code Table 3: Revised Fee ScheduleCodes – Physician Services Ministry of Health April 1, 2023 https://www.health.gov.on.ca/en/pro/programs/ohip/bulletins/redux/docs/INFOBulletin230310_table3.pdf
I'm really confused by them calling this research. Cochrane doesn't do research. I don't even know what the hell they will even be doing here, since their whole business model is useless here. GIGO with lots of GI is going to give us nothing but GO. How will they even spend $9M simply doing guidelines? Even the huge IOM literature review cost a fraction of this and they reviewed everything. The whole thing stinks and simply going with Cochrane is a massive failure in itself.
I pretty much assume the same thing happened in every country, playing out mostly the same way. There were discussions of Long Covid between the federal public health officer and provincial officers (in Canada, health is a provincial authority, with the federal government setting the overarching policies and standards) as early as April 2020. Of course that includes lobbying from patient organizations, but still there is a relatively well-informed discussion happening, one that clearly was overruled by massive hits from the hopium bong. So, when did B.C.’s health leaders (previously written: “officials“) first learn about Long Covid? As far back as April 2020 according to a legislative fact sheet uncovered in this freedom-of-information response (pgs.6-7). This is when regional Health Authorities, Provincial Health Services Authority and BC research organizations, (previously written: “they”) started plans to develop a post Covid interdisciplinary clinical care network. In other words, B.C.’s health leaders recognized post COVID-19 complications were severe enough to create a new clinical care program back in early Spring 2020, yet they did not think it was important enough to inform British Columbians about the long-term risks of COVID-19. https://protectbc.ca/public-healt-scandal-failure-to-warn/ Good thing we will have the help of AIs to untangle exactly who had what information, and what was done with it at what time, because this is all hidden behind bureaucratic secrecy. But I pretty much assume that this happened mostly the same way everywhere. After all, there is a universal component to every country's response. A common factor that has long been in deep denial of this, cannot bear acknowledging such an abysmal failure, and has the means and motivations to keep any accountability from ever happening. Partly by simply refusing to record it properly, allowing to cite corrupted records as "evidence". What they did know? More than enough. When they did know it? Early enough. However far back you go, this is true. Medicine has known about this particular issue for even longer than the tobacco companies knew about the harm of their product. It's not reasonable at all to claim that they needed more. It has been 100x enough for a long time.
Merged thread Doctor concerned long COVID patients ‘left as orphans’ in B.C. after clinic closures Dr. Ric Arseneau, a specialist in internal medicine, said there are “very few” B.C. physicians he knows of who are taking on the long COVID patient population, now that the province’s Post-COVID Recovery Clinics have closed their physical doors. “The estimate is pretty consistent across all the studies that about 10 per cent of individuals who get COVID will go on to develop post-viral syndrome,” Arseneau told Global News. “If you already have long COVID and your function is decreased by 50 per cent and you get COVID again, it may be decreased by another 50 per cent to 25 per cent and that may be lifelong,” he said. https://globalnews.ca/news/9642204/doctor-concerned-long-covid-patients-orphans-bc/
The traditional reaction, take the supports away. And, what about training for physicians to work with pwLC? Not a priority apparently. It would be interesting to know what percentage of residents in each province and territory have essentially been abandoned by governments and medicine due to complex diseases.
Wondering if you have long COVID? If you think you might be experiencing long COVID, you’re not alone. Talking to your doctor about what you’re currently experiencing is the best place to start. Your doctor might consider running specialized tests, recommended by the Centres for Disease Control and Prevention (CDC), if you’re still experiencing symptoms for 12 or more weeks after you had COVID. Based on your symptoms, they may order a group of tests, or certain specific individual tests like a Vitamin D test. they have never seen a Canadian GP apparently.
You are right @Trish In the real world, with these illnesses, symptoms defeat structure. This is a constant battle for pwME and LC in everyday life. This is the situation before medics get involved and work to overlay more structure. As if we don't work as best we can towards our own goals. ETA: As if we didn't create structure in our lives pre-illness, and maintain as much as we can after developing ME or LC. As if we are lazy and need guidance and urging from others.
