News from Canada

Missed this from yesterday and the day before. Mixed virtual and in-person symposium on Long Covid in Montreal, sponsored by a Quebec research institute.


1st Canadian Symposium on Long COVID Research excellence as a vehicle for solutions
https://frq.gouv.qc.ca/en/event/1st...search-excellence-as-a-vehicle-for-solutions/

In summary, these two days will be entirely devoted to bringing together top Canadian researchers, policy-makers and people living with Long COVID to share knowledge and demystify PCC.

The objectives of the conference are to:
  • Identify research gaps and potential areas of collaboration between the different research pillars;
  • Bring together leading experts from different fields to share their latest findings and insights on PCC and future research priorities;
  • Accelerate knowledge translation for optimal care and services.

Summary of planned activities:
  • A discussion between Prof. Mona Nemer, Chief Science Advisor of Canada and Prof. Rémi Quirion, Chief Scientist for Quebec on the state of research and government decisions;
  • Conferences and thematic presentations on current research around the biomedical, clinical, health services and population health pillars;
  • A citizen’s conference with patients;
  • Panel discussions and discussion periods.
 
rvallee said:
Something I missed happening in Quebec. I know there is at least one other user from here.

INESSS, as far as I know the equivalent of NICE for Quebec (health is a provincial authority so we have 10 such authorities) has published a guideline in April 2023. From memory, it's probably around the time they published a similar one for Long Covid, although it makes no references to LC. It's very light on the infectious nature/trigger, however.

There is a currently ongoing consultation by INESSS, the body in charge of medical guidelines and recommandations. It's about clinical management of ME/CFS and currently has 3 surveys. It asks questions about those few recent publications.
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That's fantastic @rvallee, very encouraging to hear this.

I clicked through to the surveys, it looks as though only people in Quebec can respond as it asks for your region in Quebec. I hope that INESSS receives some praise.
 
Canada’s MAID (Medical Assistance in Dying) policy is facilitating death by poverty
A Vancouver woman says she will die imminently from an otherwise manageable illness

She is one of 580,000 Canadians with a debilitating disease called myalgic encephalomyelitis (ME/CFS). According to researchers, the quality of life for people living with ME/CFS is substantially lower than those living with other diseases and conditions like lung cancer, depression, schizophrenia, multiple sclerosis, and rheumatoid arthritis.

“MAID, for me, is not a life and death choice,” she says. “It's about what kind of death I want when I run out of money.”
Like more than 1.5 million disabled Canadians, she also lives in poverty. This number is likely to continue rising as more than 1.4 million Canadians infected with COVID-19 continue experiencing debilitating symptoms that are, in many cases, similar to ME/CFS.

The cost of severe forms of ME/CFS and long-COVID is substantial. The doctors who treat her condition have told her she must conserve her energy to live — that means receiving pre-made meals, housekeeping, and laundry services. The medicines, treatments, and other suggestions provided by medical professionals could cost upwards of $7,000 per month, she says. However, few of these services are subsidized, leaving Madeline reliant on the charity of medical care providers who perform discounted services.

“When I first started to deteriorate some 20 years ago, I made five attempts to get housekeeping, and I was refused [by the Ministry] every single time,” says Madeline, adding that her condition was considered an episodic illness. “To this day, I still can't get housekeeping because there's no category of coverage.”


Many people with ME and long-COVID experience a symptom called post-exertional malaise (PEM) due to these diseases breaking the body’s energy systems. “They have less energy to start with, use it up quicker, and recover slower. Repeatedly draining the battery can lead to less battery recharging and over time, less function and worsening symptoms,” says Jessica DeMars, a physiotherapist treating people with long COVID-19 at BreatheWell Physio.

https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
 
That's a really tragic situation. But I can't understand this bit:
Mij said:
The medicines, treatments, and other suggestions provided by medical professionals could cost upwards of $7,000 per month, she says.
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Unless an individual has other treatable conditions, I don't know of any treatment for ME/CFS, let alone ones costing that much. I hope she can get better medical care.
 
Holy shit she contracted Covid from Life Labs! That's where I go to get my blood drawn. I'm definitely going to pay the $80 home visit next month.
 
Mij said:
Canadians are travelling to Mexico for Lyme disease treatments. That worries health experts.
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I was ignoring this, but Irony had to crap all over me with an embedded tick, not five minutes ago, which I shredded with tweezers inadvertently and amarteurishly as I struggled to remove it.

Whatever happens I will NOT be traveling to Mexico for treatment.

But I'm not Canadian, so those experts needn't worry.
 
Canadians, we are trying to work out what ME/CFS and Long covid organisations we should contact regarding the Cochrane Exercise Therapy Review campaign.

Millions Missing Canada has signed. Thank you.

Canada AQEM – Association québécoise de l’encéphalomyélite myalgique - we haven't had a reply to an email sent on 14 Sep.

Action CIND - no reply to an email sent on 24 Sep. Is this organisation still active?

National ME/FM Action Network - just sent an email today

Are there other organisations we should be contacting - provincial organisations? Please send me a message if you have ideas.
 
I think there is a thread about the Canadian Post-COVID initiative, but I couldn't find it. The one handled by Cochrane Canada and McMaster University, for which they were given millions of dollars to write guidelines.

Yesterday they sent a survey (https://canpcc.ca/public-comment/), giving one week to reply. All they ask is comments about a handful of generic statements such as (loose paraphrasing): "medical professionals should teach the public about Long Covid", "patients with LC should be listened to by MDs", "MDs should do basic medical workup for post-COVID condition", "health systems should monitor for and record post-COVID issues", "MDs should make sure to have care plans for patients", and so on.

Not impressive, to say the least. I mostly replied to those statements that they sound nice but are generic fluff and mostly amount to things that were supposed to be present from the start, but aren't, and so are entirely meaningless on their own without ways to enforce them and changes in attitudes.

There was no additional way to make comments, but after all this time, and with a significant sum involved, this is really unserious work. I don't know where this will lead to, but IMO they mostly seem to be clowning around and coasting on a lot of money that will likely end up with nothing to show for it.

I could be wrong. I doubt so.
 
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