Canada's Minister of Health: special livestreamed announcement about ME Thurs Aug 22 at 2pm (EST)

[waiting]

Canada's Minister of Health will be making a special announcement about ME on Thursday, 2pm Montreal time (EST). You will be able to watch the announcement on live stream here:

https://livestream.com/CHUSteJustine/events/8789125

If you are able to join the livestream, it will help show the Canadian government ME is an important issue.
If you live in Montreal, it would really be great if you could attend in person : )

The official invitation is attached (1st page in French; 2nd page in English).

 

[keepontruckin]

Months ago I sent the newspaper? article about Ron Davis to the PM's Office who then emailed they had forwarded it to Health Canada. Months later they emailed back that something would be happening in August. I will be listening. Currently there is no funding for cfs, I think.

 

[HABS93]

It would be nice. Sometimes I feel like CFS is somehow a plan to make us sick to forget what is actually happening in the word. So many sick but no one can figure out what is going on? We can flymto space but can't atleast have some sort of treatment for CFS? Maybe they don't but I just don't get it.

 

[Mary]

(tagging @ScottTriGuy FYI)

 

[EnlightenME]

It would be nice. Sometimes I feel like CFS is somehow a plan to make us sick to forget what is actually happening in the word. So many sick but no one can figure out what is going on? We can flymto space but can't atleast have some sort of treatment for CFS? Maybe they don't but I just don't get it.

I know it makes you wonder sometimes, especially with the growing number of people with this and so young. I also think there are a lot of hidden sufferers in depression sub populations and alcohol and drug groups like Ritalin users.

 

[EnlightenME]

I hope tomorrow’s statement address the stigma around this illness as a real illness and that health Canada takes it more seriously and funds more research. Especially with so many still without a diagnosis and good care.

 

[Gingergrrl]

I’m sure everyone knows the time of the announcement in Canada but tagging a few people just in case @PatJ @Alvin2 @Dechi

 

[ScottTriGuy]

I'm flying to Montreal today for the announcement - it will be good (but not enough, of course) news.

Part of the challenge of prepping for the announcement is having to educate the many levels of bureaucrats around things like not using the stigmatizing term 'cfs' - except to note that it is stigmatizing.

I would encourage all ME patients to start training their own health care folks to use 'ME' and not 'cfs' - it will help quicken the demise of the 'its all in your head' narrative.

Training the media is a whole other challenge, especially when they write for grade 3 level reading.

 

[Dechi]

I’m sure everyone knows the time of the announcement in Canada but tagging a few people just in case @PatJ @Alvin2 @Dechi

Thank you @Gingergrrl for tagging me ! I will be watching it via videoconference today. I wish we had known beforehand, I could have made arrangements to go.

I’m very happy about this. It will help us be taken more seriously by medical staff.

 

[Diwi9]

Bumping this thread up...announcement starting soon.

 

[bread.]

not working?

 

[Diwi9]

not working?

I have no feed with the link.

 

[Diwi9]

The link is live now. Looks like their countdown timer was off by about 30 minutes.

 

[Countrygirl]

Lots of crowd noise.

 

[PatJ]

I was hoping a government announcement would include subtitles. I can't listen to audio due to sound sensitivities. Can someone please summarize the announcement here once it's over?

 

[Joy&K0$]

A VERY VERY approximate transcription of the Minister of Health's words. Her speech in English and French - my French just not good enough for much transcription.

Minister of Health Petipas Taylor:
“cinc cent quatrevingt mille Canadiennes” (580,000 Canadians) - she repeated this figure twice.

"Because they suffer from constant exhaustion that sleep does not relieve, headaches, all those people have fdifficultly doing things that we taken for granted every day… diagnoses are difficult and treatments inaccdessible. Difficult for doctors to make the right and proper diagnosis. After several years of trying to find a doctor or specialist, Sebrina had to go to the US to get diagnosis and treatment. This is an expensive and physically overwhelming undertaking for patients – many cannot afford travel physically or financially.

La pluspart des patients sont oublier par la systeme…

We (minister and patients) also discussed the need for equitable research funding, awareness, existing programs and policies for ...patients. They asked for action and not just words. And I’m listening. And I could not agree more.

Gov’t is pleased to announce $1.4M (CAD) investment in national network … re causes and treatment of M.E.
Cause of M.E. genetic and biological….
Led by Dr Alain Moreau….
Concerted research effort. Today our government engages in new search for scientific enquiry in M.E.
I have to say that when I met many patients – they thanked me – and in actual fact, I thank each and every one of you that shared your stories, journey, challenges.
We have come to understand how difficuolt it can be to participate in daily activities… so we are aware of cost to you to participate.

Bottom line, a national Canadian network. Images on opening slide: "Interdisciplinary Canadian Collaborative: Myalgic Encephalomyelitis Research Network. Canadian Institutes of Health Research and the CIHR Institute of Musculoskeletal Health and Arthritis

“Incredible group of researchers”.

$1.4M a pittance, BUT it's a start, with the MOH visibly involved. Gut feel - political will is in our favor. Time will tell

 

[Gingergrrl]

$1.4M a pittance, BUT it's a start, with the MOH visibly involved. Gut feel - political will is in our favor. Time will tell

I am not Canadian but this sounds like good news b/c it means that they are taking ME/CFS seriously as a medical condition and that patients should not have to travel to the US to be assessed (like many US patients shouldn't have to travel to Canada to afford their prescriptions and insulin but I digress ).

I was just curious, how much money was devoted to ME/CFS in Canada before this announcement of 1.4 million?

 

[waiting]

Thank you to anyone who watched the livestream. At one point, there were 408 viewing.

Thanks to a fellow advocate, here's the press release from the Canadian Institutes of Health Research:

https://www.canada.ca/en/institutes...le-living-with-myalgic-encephalomyelitis.html

 

[waiting]

Here's a Montreal news outlet's article (thanks again to a fellow advocate):

https://montrealgazette.com/news/lo...-million-to-research-chronic-fatigue-syndrome

 

[Roy S]

https://twitter.com/i/web/status/1164614492644421637