News from Canada

Especially stupid set of circumstances: a long hauler went for a vaccination and was expelled by replying affirmative to experiencing Long Covid symptom, because denial of LC means medical and vaccination personnel are not aware that they do not mean an active infection. Hard to imagine this is a unique situation. I answered no to those questions precisely for that reason, knowing it would be stupid. It's amazing how common it's necessary to lie about such things. The same way I would advise anyone from denying any "mental health" anything in every circumstance other than if this is why they are seeking help, even if true. What a dysfunctional mess.

Another annoying thing in that article, which speaks a bit more about LC, it quotes a physician touting the potential use of vaccines as a treatment. The article mentions % that are obviously cherry-picked, but nonetheless show 1/5 deteriorated, followed by a quote from the physician saying that the good thing is that there are no risks. Which is awfully confusing, in the same paragraph, mentioning that 1/5 deteriorate, then quote someone saying it's good that no one does. Good grief. Molasses has more clarity to it.


Atteint de COVID longue, on lui refuse le vaccin
https://www.journaldemontreal.com/2021/08/13/atteint-de-covid-longue-on-lui-refuse-la-vaccination

Suffering from long COVID, he is refused the vaccine
https://translate.google.com/transl...-de-covid-longue-on-lui-refuse-la-vaccination

However, Mr. Sévigny has suffered from several health problems since, to the point of having difficulty standing for more than a few minutes.

Before receiving his first dose, he wanted to make his medical condition known to the clinic staff, whether the vaccine was recommended for patients with his condition.

...

“They didn't differentiate between having COVID and having COVID long. We were treated as if we were irresponsible people who were going to be vaccinated by being contagious, ”denounces Mr. Sévigny's wife, Louise Gaboury, who was present at his side last Tuesday.

...

“I don't know if we're going to go back. We will probably wait to go to his doctor at the end of the month to make a decision, ”confesses Ms. Gaboury, discouraged.​

How not to handle a public health crisis 101.
 
brf said:
Recognizing that nearly 600K Canadian patients with ME together with their families and supporters could represent potentially millions of voters, a few advocates collaborated on preparing a letter last weekend to send to each party leader. The letter can be read in English and French at the links below.
Click to expand...

Millions Missing Canada is asking for people to co-sign their letter asking political party leaders what they are going to do about ME/CFS:
Millions Missing Canada advocacy, letter to political leaders during Federal Election 2021
 
rvallee said:
Haven't watched it in full, seems OK but doesn't add much we don't know, and unsure when it aired, as I only found it through a direct link, but 10min interview with a long hauler who mentions she has (had?) ME and how medicine simply has nothing to offer here.
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Just watched. Kelli, is a previously healthy & active physiotherapist with long covid. She was dismissed from a long covid clinic with little help and has also seen numerous specialists with little effect on her illness.

She has now been diagnosed with ME and explains how we've been ignored by medicine. She's speaking out to advocate for research.
 
I think Governments should be up front with long haulers that many are not more likely to achieve recovery than those with cfs and save them going to 50 or more health professionals. Resources should be redirected to autoimmune research if it appears it is autoimmune. They have been researching rhumatoid arthritis vaccine not to prevent people from getting RA but as better treatments. We need answers as to whether this is autoimmune or not as soon as possible.
 
VINEx and Covid Long Haulers support group Canada welcome Liberal Party of Canada's commitment to allocate $100 million to COVID-19 research.

https://www.newswire.ca/news-releas...0-million-to-covid-19-research-849828252.html

"Many Long COVID impacts are neurological or psychiatric in nature, including headaches, "brain fog," impaired memory and concentration, dizziness, anxiety, depression and insomnia. In a knowledge-based economy, our brain health is integral to our economic prosperity," says Inez Jabalpurwala, Global Director of VINEx. "Canada is a leader in brain research, and with the additional funding to the Canadian Institutes of Health Research, we are poised to make even greater contributions to understanding how viruses may directly or indirectly affect the brain."

 
I'll believe it when I see it in details, and not wasted. Seeing how things went in the US and UK, it's clear that even when funding is allocated with explicit instructions, it means nothing, or it just gets wasted on pet projects having nothing to do with the problem. The problem isn't in government, it's that medicine is just as much the problem as the problem itself.
 
Mij said:
I didn't realize that Canada was 'a leader in brain research'.
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I don't think we are but it sounds nice and fuzzy to say it.

By comparison to most countries obviously we technically are, benefits of being a wealthy country. But that's a very low bar, it's the Being there of bars.
 
Canada has Norman Doige. Who is seen as a leader in the field.

See:

https://www.normandoidge.com/

Because the subject is the brain and neuroplasticity there can be a lot of intersection with mind. I read his books decades ago and so don't remember them much.

But I think some of this can be abused by neuropyschiatrists who go beyond the what's actually known into a world where by the power of their mind they can heal your broken toaster.
 
A few years ago I asked my GP if we could check for POTS, maybe a referral, and she didn't know (or pretended not to know) what it was. I didn't know about dysautonomia so didn't ask but I'm not sure it would have been any more useful.

There is simply nothing available for this because it just doesn't exist as a medical entity as far as the health care system is concerned, so it's great and everything to "sound the alarm" but if health care services are not trained properly for this this is actually bad because it will only lead to the patients being gaslighted and adding "health anxiety" to their medical record.

What those physicians need to understand is that it's their profession that needs to understand this, not governments. Anyway...


Doctors warn of possible rise of debilitating nervous-system disorder in patients with long COVID-19
https://www.ctvnews.ca/health/coron...rder-in-patients-with-long-covid-19-1.5615322

That’s why both Guzman and Huynh emphasized the need for more funding from provincial and federal governments to research the long-term effects of COVID-19 and the disease’s relationship with POTS, more specifically.

“We’re going to need more funding and that's what I'm trying to get because to really know the cause you have to do more expensive testing, which includes MRI of the brain,” Huynh said.

Guzman is also in the process of researching the connection between POTS and long-COVID by establishing clinics to study patients who had the virus. He said he expects to see more patients develop POTS as the pandemic continues and people experience long-term symptoms of the virus.

“We are expecting that surge,” he said. “This is coming to us. That's why we are trying to get funding from the government.”​

Oh wow you expect to see the surge that's been happening for well over a year? Damn, talk about major predictive powers. Meanwhile those of us who literally warned this would happen are still completely out of the picture, no one talking to us, or even hearing what we say. That's shmart.
 
Yesterday's Globe and Mail had an article on Long COVID focusing on the importance of vaccinations in reducing risk of Long COVID. This is good but there are some major problems with the article, the easiest to fix is that the it equates chronic fatigue syndrome with fatigue - not a multi system disease.

I sent a supportive email to the writer pointing this out with some background information on M.E. hoping she would make an immediate correction but this didn't happen. I also posted on the ME & CFS Canada FB group and some other group members are also contacting the writer.

Here's the article (paywalled but you get a few free articles a month) :

https://www.theglobeandmail.com/can...ObzhG78k9HvA5t43JHEMGRUC5Wblq2k4jijZ78ZHMgg4I
 
Here's where she talks about CFS & fatigue.

"Long COVID shares similarities to chronic fatigue syndrome, and some patients infected during the SARS outbreak almost two decades ago also developed longer-term side effects. But, according to the Ontario Science Table report, Post COVID-19 Condition has been associated with 10 organ systems and 200 symptoms. Fatigue is among the most common, but the list also includes hair loss and vomiting, and changes in taste and smell."
 
Jonathan Edwards said:
That does not sound like confusing CFS with fatigue?
Fatigue is being used as one of many symptoms Covid-19, amongst many. That would be similar to chronic fatigue syndrome where fatigue is one of many symptoms?
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Yes - I can see reading it that way too.
 
Although there is no official program in Canada, Cheung is basically the de facto authority on Long Covid.

 
New Canadian youth support group
The Invisible Youth ME-FM-MCS Support Group is a virtual support group for youth aged 13-21 that suffer from Myalgic Encephalomyelitis (ME), Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS) or Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS). It is currently scheduled to run every other Saturday from 3-4:30 pm ET on zoom. I started this group with my brother Matthew to connect with other teens who would relate to the challenges we are facing.

Code: 
https://www.youtube.com/watch?v=Br_O7C4HCcQ
 
https://www.theglobeandmail.com/can...ObzhG78k9HvA5t43JHEMGRUC5Wblq2k4jijZ78ZHMgg4I

Regarding this article: the author is a reporter on mental health.

Apart from a few rather serious diagnoses in mental health it seems to me that the larger area of anxiety / depression etc is a field rife with a lack of any real -- (I'm struggling for the right word here) -- soundness. Clearly, the G&M health editors take the view that all health issues that do not have nice tests to verify them must be mental health. No real surprise there.
 
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It's getting more absurd with time that hardly anyone seems to be troubled by the fact that medicine hasn't even bothered giving this a proper name and formalize it. As if no one even expects that someone will. It's hard not to conclude that the whole point is to minimize and ultimately erase it, as it will continue to be argued that it can't be that serious if it's named and defined by patients, a situation that only exists and persists because apparently it's no one's job to do this.

The helpless bystander effect in medicine is very strong, everyone is waiting for others to do something, but no one is actually tasked with this so it just doesn't happen and time cements denial firmly in place. It's the patients doing most of the heavy lifting but it doesn't add up to anything because we have no role to play in our own health.

 
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