Bit more about the conference. https://twitter.com/user/status/1402998041934635020 https://twitter.com/user/status/1403198592425201670
News coverage has by now reached most major publications in Quebec, with this report in La Presse. Pretty good overall, mostly features recently-introduced researcher Simon Décary, from Sherbrooke University, explaining the issues with PEM, how they began their rehabilitation program and quickly responded to evidence that it was causing significant relapses in many of their patients. The article is published under a category heading of "Long Covid", perhaps suggesting it will be a running topic. Maybe. La pandémie n’achève pas pour tout le monde The pandemic does not end for everyone https://www.lapresse.ca/covid-19/20...-pandemie-n-acheve-pas-pour-tout-le-monde.php https://translate.google.com/transl...-pandemie-n-acheve-pas-pour-tout-le-monde.php Patients were first offered rehabilitation similar to that which is normally offered after a long illness or long hospital stay. “And that's when we started having problems,” said Simon Décary, a physiotherapist affiliated with the University of Sherbrooke. People with long-lasting COVID did not respond to standard rehabilitation protocols at all because of a syndrome that will only be described in December 2020, post-stress discomfort. " When trying to apply exercise rehabilitation programs, he said, these patients relapsed. Up to 90% of patients with long-term COVID would experience relapses related to physical activities, activities of daily living, or cognitive activities. “We had to completely change our approach to understanding rehabilitation,” said Décary. This is where communities of patients, such as those with […] chronic fatigue syndrome, have helped us a lot, because it is a postviral disease of which one of the most frequent symptoms is exhaustion or very great fatigue. " As soon as the link was made with post-viral illnesses like chronic fatigue syndrome, specialists were able to begin to rely on an abundant scientific literature to try to find solutions. The most important thing, the patient associations also told them, is to be able to identify and avoid the triggers of symptoms and relapses, so that patients' lives can be reorganized in a meaningful way. https://twitter.com/user/status/1404132797468524548
Anyone know about this? https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ Haven't heard of this. It's a good article otherwise, but the details are the same old we already know of: horrible and no one but us cares.
Canadians with long COVID: Sick and, increasingly, worried they’ll go broke https://globalnews.ca/news/7998787/long-covid-canada-long-term-disability-sickness-benefits/
“It’s an invisible illness, it’s much like … chronic fatigue syndrome, (that is) myalgic encephalomyelitis,” says Susie Goulding, a floral designer based in Oakville, Ont. She’s a COVID long-hauler who founded COVID Long-Haulers Support Group Canada, which has almost 14,000 members" "Still, it doesn’t help that, unlike the U.K., Canada has yet to establish a clinical definition of long COVID".
How to do something without helping. The important thing is completely down to chance, and almost always useless. I had a GP when I got ill. Zero help. I have a GP now, who diagnosed me. Also zero help. But sure, let's add money to the thing that is not able to help, surely that will help. They will do no such thing, will not record our symptoms, will not provide referrals because they are explicitly advised not to, this is not part of the algorithm to deal with chronic illness, literally the opposite. Thoughts and prayers, basically. At best this helps themselves, puts more money into general practice, none of which will help anyone living with chronic illness. Shades of "why don't the poors just buy more money?". Very useful, thanks, I never thought of making my GP an ally who will help. No one ever has.
"Vancouver is home to one of Canada’s three ME/CFS clinics, and a fourth is coming soon to Montreal." ------------------------- Three ME clinics in Vancouver!! How come all the folks I know out west are not getting seen by anyone. And one coming to Montreal. Perhaps Dr Moreau is connected; I do not know. At the CFS conference in Montreal some time back he was collecting the names of GPs who might be interested in seeing patients, and he was asking them to sign a sheet. Perhaps he is trying to put something together. I might write to his office and enquire. But what can they offer patients that all the USA CFS doctors haven't already offered.
The treatment was almost certainly stitched up in2001 in the document only available to members of the IBC agreed between, inter alia, Axa Insurance, Royal and Sun Insurance and Prof Arthur Cott of McMaster and Prisma Health.
The way I read this is that Vancouver has ONE of the three clinics. I believe that the clinic is the one discussed some time ago that Alison Bested was tapped to run and then she quit because of the BPS influence there. I think Nacul is there now but I'm not sure it;s the same clinic for sure. One other clinic may be referring to the Environmental illness clinic run through Women's College Hospital in Toronto. I was diagnosed there. My guess would be the third clinic (and it's just guessing) is in Alberta where Elinor Stein is. None of these clinics can offer anything other than a diagnosis and some minimal support. The clinic in Montreal will likely not be much different except if it is set up to do drug trials based on whatever is being found through the work there. And of course they have Alain Moreau. My GP is taking the attitude that the best possibility of help in the near future will be for symptoms of dysautonomia not ME per se. I think I agree with that assessment and wish that there would be more attention paid to clarifying which symptoms are related to OI and then researching how it can be fixed. I think this might be a simpler problem that would lead to improvement at least while still working on how to fix what is wrong in ME. But I'm going off track here . . .
The 3 clinics in Canada are CCDP in Vancouver, the Environmental Health clinic in Toronto and ICCS in Halifax, Nova Scotia. The 4th clinic alludes to one in Montreal.
AT this point, there is not clinic in Montreal. But I will let you folks know; I will write a letter to the assistant of Dr Moreau. But as is being pointed out there is not much they can offer at this point--maybe in future a drug trial. @Snowdrop--my daughter says her primary miserable symptoms is PEM; she says she could manage the rest, but that one is a gaoler for it prevents life. (Sorry I read rapidly regarding the clinics; I am running to hospital daily.)
This is better than nothing but this is all stuff that should have been out on day 1 and it's basically 1 pamphlet and 1 video that provides no information beyond what has been known (and dismissed by medicine) for decades. That after 16 months we are still at the exact same spot is simply unacceptable. The video mixes PEM with fatigue (and fatigue with drowsiness) and there is still way too much focus on fatigue, that's just plain misleading. What I don't understand is how so few people seem to care about there being no progress at all, it's fine, no sense of urgency at all, time can just flow by without anyone caring enough to do more, years go by and people will care even less. Infinite tolerance for failure where chronic health is concerned. Acute or bust. https://cancov.net/patient-resources/ https://twitter.com/user/status/1413953379416649731 There's something amazing talking about pacing in the context of PEM that completely ignores its origin, makes no mention of ME, even though as the tweet says this is where it came from. https://cancov.net/controlling-long-covid-symptoms-with-pacing/
Health authorities in Quebec published a pretty good advisory for physicians, emphasizes PEM and avoiding relapses. Even has a pretty good description of PEM. I wish they asked themselves where that term came from. Oh well. At least it's good, better than I expected. It even explicitly advises against prescribing exercise, however it may be named. There is a small section on psychosocial stuff and it explicitly mentions psychosocial "consequences", and merely as supportive. Basically all the things we have been saying and asking and were refused for decades. Doesn't explicitly claims this is all brand new and never-before-seen but I can't find any recognition that it isn't. All stuff that we knew from day, well, -10,000 at least. Quantum progress: it happens in the smallest increment the universe allows. English: https://www.inesss.qc.ca/fileadmin/...INESSS_Management_support_tool_post_COVID.pdf Français: https://www.inesss.qc.ca/fileadmin/...INESSS_Outil_prise_en_charge_COVID_longue.pdf This was published by INESSS, a provincial authority, which in 2010 published a pretty good document on ME/CFS, sad they don't seem to remember what they do: https://www.inesss.qc.ca/fileadmin/doc/AETMIS/Rapports/Autres/2010_02_monograph_en.pdf.
You can sign up for drug trial with Dr. Moreau's assistant. Sophie he wrote this: We could invite your daughter to participate to our clinical study. My clinical research nurse, Ms. Sophie Perreault (cc’d on this email) will do a follow-up with you regarding the participation of your daughter. Sophie will explain in details our consent form and research protocol. her email is sophie.perreault.hsj@ssss.gouv.qc.ca i have no idea what the drug trial is. maybe they mean when they have a drug to trial but i guess Sophie could explain.
Thanks a million for sharing this information! I have just sent a letter to Mme Perreault. When I get news I will share.
It's a small study but notable that it is apparently funded by Pfizer. Which is interesting, as pharma interest clearly drives a lot of medical research. If they put up funds scientists will follow. Although it's small enough that I doubt much will come of it and frankly there are already dozens more of this scale, at this point it's becoming seriously redundant to have people do the same thing in parallel, especially if all they do is run the exact same set of basic tests looking for known things, not especially useful when searching for the unknown. Will run in Montreal. https://muhc.ca/news-and-patient-st...dy-evaluates-long-term-complications-covid-19 The investigators aim to recruit adults who have been diagnosed with COVID-19 in Quebec and have experienced symptoms suggestive of cardiac dysfunction such as shortness of breath, palpitation, dizziness or chest pain during or after COVID-19 infection. Participants must have been diagnosed with COVID-19 at least two 2 months before enrollment in the study.
I wrote to the secretary and was informed that this is not a drug trial, but they are trying to develop a diagnostic test in his lab. She did not offer us anything--such as participating, or anything. She said that there is no project for treatment development yet, and not before 2022. She said she did not know what drugs might be offered in the trial once/if it was set up.
Long-haul COVID predicted to be economic, insurance battleground https://torontosun.com/health/diet-...edicted-to-be-economic-insurance-battleground Long-haul COVID is a post-infection chronic disease syndrome, just as fibromyalgia, chronic fatigue syndrome and chronic Lyme disease. It’s estimated that some 10 to 30% of people who have had COVID still suffer terrible symptoms, sometimes for months after being infected. ... The problem is that long-haul COVID is already being written off as “psychological” in some quarters, which means it will not be investigated properly. Your best line of defence is to be vaccinated. Unfortunately, as with other “mystery” post-viral illnesses, insurance frustration is already on the horizon. ... Some people suffering long-haul COVID had very mild symptoms of COVID itself; others were asymptomatic. Insurers can demand medical paperwork, but some people told to isolate for their COVID symptoms were never tested. And most people saw their doctors remotely during the pandemic — there may be no paper trail at all. ... “Insufficient medical evidence will be the excuse insurers offer.” There are no chemical markers or specific tests to measure long-haul COVID, and insurers will lean on that lack of objective results. Younger people get long-haul COVID, “So we’re talking about people 35 or 40 who cannot re-enter the workforce. They have brain fog and overall fatigue and can’t focus,” said Rastin. “What will we do if hundreds of thousands of people are rendered non-functioning? And why aren’t we looking at that?” ... Insurers had some benefit from fewer claims during the pandemic. “Now they should fulfill their obligation to society.” Right now, said Rastin, there’s no way of knowing if people will ever recover from long-haul COVID. They've also benefited from decades of non-payment by promoting denial of chronic illness, sacrificing lives for profit. None of this is accidental, it happened because people lobbied and paid for a very significant ROI. Just as they did with the tobacco companies and will happen to the fossil fuel companies, the insurance industry needs to be milked for having abused this, they used exactly the same tactics as the other dirty industries did, including banking on fake experts who abused political influence to get their way.
