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

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  1. Fantastic to see this kind of scientific focus on M.E. in/ Canada. Definitely a step in the right direction.
  2. So appreciate the involvement of patient advocates - and the price they will pay
  3. It's not just a bunch of researchers with no access to $, but a strategic initiative with the government of Canada, Canadian Minister of Health, & CIHR explicitly involved, luminaries like Dr Moreau with links to the OMF, and multi-center and international collaboration.
  4. Then again, let's put this in perspective. $1.4M/580,000 Canadians with M.E. (their figures) = $2.41/patient. That's $2.41 Canadian, so about $1.81 USD/patient. So I'm having some difficulty with the fanfare that this will improve the "quality of life" for 580,000 Canadians before I reach my 4th decade with this devastating disease and no approved treatments.
  5. But it IS a start, a step in the right direction. Let's hope the Canadian government and CIHR gain some sense of urgency to put more "real" money behind this ghastly disease.
Postscript: Wait a minute... the Gov't of Canada press release (link above) said, "This $1.4M, five-year investment aims to improve the quality of life of people living with ME through...."
So am I correct that point 4 above should read $1.4M/580,000 Canadians/5 years = $.48 CAD/patient/year or $.36 USD/patient/year? Or is it $1.4M/year??? People like Dr Moreau and the OMF need more support to get some REAL money. This current investment - if $1.4M over 5 years - will pay for collaboration admin fees, a yearly conference, and maybe some minor research tinkering. Or... maybe like taking your dog to dog training, so YOU can be trained, maybe this money will be an investment to educate the gov't and medical system that this disease is biomedical, devastating, complex, widely prevalent, and desperately in need of a massive investment?
Still a step in the right direction, but a tiny step; am I missing something?
 
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Countrygirl

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While this is good news (I think the 1.4 million is a bit paltry though......hope that is increased)..........it raises another issue to me. that involve a considerable injustice to one of the physicians who has supported ME patients for decades.

Yesterday, we received the very bad news that Dr Byron Hyde from Canada who has helped so many with ME has had his medical licence removed with, what I have been given to understand, are trumped-up charges.

I have personal knowledge of the lengths Dr Hyde has gone to in order to help his patients when, for example, he travelled all the way to the SW of the UK to try to rescue a patient of his who has been sectioned for believing in the diagnosis of ME Dr Hyde gave him in Canada.

It is a cruel way to treat a physician who has spent so many years helping people with ME. He is not prepared to fight the charges as he is in his early 80s, but I think that it would be a good time for one of our Canadian members to contact the Minister of Health and put her in touch with Dr BH so he can tell her the truth behind the allegations. Perhaps then his considerable experience could be put to good use in the new endeavour.

Is anyone able to do this, please?
 

Countrygirl

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@Countrygirl I heard about this yesterday and maybe we should start a new thread re: Dr. Hyde?
Yes, although Dr BH hasn't made a public statement yet, just to others privately. What I have been told is that the charges are trumped up, but he can't fight them. It sounds as if they are determined to take him down, which is a miserable way to end your career at 82 and downright cruel. There is an injustice being committed here.

I hope one of our Canadian members will act as an intermediary and get the story, and Dr Hyde's explanation of events to the Minister. He also has valuable knowledge to share with the new young researchers.
 

Gingergrrl

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Yes, although Dr BH hasn't made a public statement yet, just to others privately.
If he hasn't made a public statement yet, maybe we should move these posts to the "Member's Only" section and start a thread there?

What I have been told is that the charges are trumped up, but he can't fight them.
Do you know why he cannot fight the charges?
 

Countrygirl

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If he hasn't made a public statement yet, maybe we should move these posts to the "Member's Only" section and start a thread there?



Do you know why he cannot fight the charges?
At 82 it is too much and also, I suspect, for financial reasons. I think the College has been out to take him down for a long time. as he is regarded as a bit of a maverick...................which is why he was prepared to help ME patients. They may also be using him to fire a warning shot against others who are keen to put patient welfare before the rule book. Certainly, in the UK no conventional doctor is prepared to genuinely help anyone with ME, and only those with real integrity (and intelligence) fight and work for us.
 

Gingergrrl

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At 82 it is too much and also, I suspect, for financial reasons. I think the College has been out to take him down for a long time. as he is regarded as a bit of a maverick...................which is why he was prepared to help ME patients. They may also be using him to fire a warning shot against others who are keen to put patient welfare before the rule book. Certainly, in the UK no conventional doctor is prepared to genuinely help anyone with ME, and only those with real integrity (and intelligence) fight and work for us.
Thx for explaining all of this. Is the "College" a board that monitors doctors in Canada or something else?

Even though I never met Dr. Hyde, one of the things I really liked about him was that he truly ordered tests and ran investigations to rule out other medical conditions vs. telling everyone that they have "CFS" and kicking them out the door (like most docs in the US). I want to say more but don't want to take this thread off track from the announcement made about the 1.4 million for ME/CFS in Canada.