Canadian Federal Health Minister to make announcement regarding ME, August 22

Seems like the theme was "our government believes in science" as everyone repeated it. I like it. So do I!

 

Good personal testimony conveying the gravity of the disease by a patient (didn't catch the name), how the most severe patients can be bed-bound for years, decades. Emotional. This is a pain we all understand.

Thank you to both. I see you, Sabrina. We all share this pain. This is exceptional and I'm looking forward to participate, being lucky that this is in my backyard. Wish I could have been well enough to be part of this achievement.

 

Well, this is already the most significant effort so far by any government in terms of messaging.

Hopefully more funding will follow but the message is as clear as it gets and comes straight from the top.

 

Thank you very much @rvallee for live-messaging everything they’re saying (don’t have energy to follow all).

 

That's all, folks!

 

Thanks @rvalee....you always say exactly what u think so I'm delighted that you are impressed...you don't give praise unless it's well justified!!

 

Yes, the health minister clearly gets it and researchers that spoke too. The patient was great too!

 

So now to spend a few days writing thank you letters.

If anyone wants to do the same:

Ginette Petitpas-Taylor, federal minister of health: Ginette.PetitpasTaylor@parl.gc.ca and @GinettePT on Twitter

Dr Karim Khan, IMHA Scientific Director: Karim.Khan@cihr-irsc.gc.ca and @KarimKhan_IMHA on Twitter
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Obviously Dr Moreau, who is well aware of how important this is, but I don't think there can be too many thanks: alain.moreau@recherche-ste-justine.qc.ca.

A few others spoke but I didn't catch everyone's name and role. I will also be writing the federal MP for Outremont (where Ste-Justine is) who was present as it's always appreciated, no matter how small a role.

 

I would definitely have liked a more significant budget but the messaging was definitely there and it seems sincere. I'm well aware of how much resistance there is to the very idea that this is a problem worth solving so that has to be taken into account. The messaging was not toned down and that counts for something.

 

Our health minister’s official twitter account is @CDNminHealth and it would be preferable to use this account.

 

From discussions with the research nurse when I went to Ste-Justine for the cuff test, all of Moreau's funding was from private donations. I don't know much of an increase that makes, however.

 

Well done and thanks to all who contributed which helped pave the way for this.

Thanks also to those involved in activism regarding the research budget/similar.

 

Wow this is so amazing. I don’t know the history of Canadian M.E politics. But as far as I knew it used to be as bad as the UK? Can anyone tell me how there’s been such a big turnaround and what led them to this point?

I hope we can expect something like this from the UK

 

The funding announced is to commence the important work for building a research collaborative and building research capacity. 1.4 million$ is something to get us started. The Canadian health minister publicly recognizing ME and acknowledging patients are suffering is an important first step. Getting an ally in Dr Karim Khan the director of the research institute where ME is housed is also an important stepping stone. This is the foundation building of a research program in Canada.

Very exciting times!

 

The unambiguous official recognition is probably worth a lot more than $1.4 million because it makes further gains in various areas easier to achieve.

 

The moving personal account of living with ME came from Christiane Garcia of @Action CIND

I am immensely grateful to all who worked toward this moment. I hope that this momentum continues with more initiatives.

 

Does any one know if this is likely to show up on YouTube or elsewhere? The high data rate of uncompressed streaming made it impossible to watch on my slow internet hookup . It also didn't help that I took Spanish in high school... and German in college. )

 

https://twitter.com/user/status/1164614492644421637


P.S. I have asked an expert opinion as of which account should be used for the health minister.

 

As @rvallee already noted Dr Khan’s words on « time to take the insult out of the injury » were all so welcome, and his tone felt so sincere and genuine. Bravo and thank you Dr Khan! (and of course to everyone else who is contributing to this)

 

Thank you @rvallee for your play by play.

We have all, wherever we live contributed to this day. From the small group who worked intensely on this specific achievement, to all long time activists, to any who have ever messaged, or told anyone about this horrific, neglected
disease, we have contributed to this bright day!