Ottawa To Set Up National MS "Surveillance" System

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Ottawa To Set Up National MS "Surveillance" System

Postby Blaze » Wed Mar 23, 2011 8:35 am

The Toronto Star is reporting the federal Conservative government will set up a national MS "surveillance" system to monitor the symptoms and treatment of MS. It seems this would include tracking of patients who have been treated for CCSVI outside of Canada.

Here's a link to the article:

http://www.thestar.com/news/canada/arti ... nce-system

The article says this would be funded through Canadian Institute for Health Information.

I don't know if this was included in yesterday's budget or how it will be affected by what appears will be the fall of the government and a spring election.

Despite this, there is still nothing for actual treatment--or even for Canadian clinical trials like Dr. MacDonald's. The word "surveillance" makes me feel like we are being treated like criminals.
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Postby PCakes » Wed Mar 23, 2011 8:54 am

The article tries to tie Dr Kirsty Duncan to this decision..
“We absolutely need evidence-based medicine in Canada and that means we have to collect the evidence,” Liberal MP Kirsty Duncan (Etobicoke-North) said during a rally by MS patients on Parliament Hill last September, where they demanded the treatment be made available in Canada. “There are two ways to do it: clinical trials and a registry.”

I will choose to wait for a direct comment/response from Dr Duncan.

The article is loaded with inflammatory and sensationalisitic words.
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Postby Doodles » Wed Mar 23, 2011 9:02 am

Once again CIHR and its "experts" will be handling this surveillance and note that it is gathering data to better diagnose MS (there is no definitive test) and to treat MS. Note as well that this surveillance will be done using the network of MS research clinics who harbour those individuals most against even talking about CCSVI. This is pre-election posturing with no real substance.
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Postby Kleiner » Wed Mar 23, 2011 9:08 am

I particularly enjoy the quote at the end from the Government source:

“We’re doing it all,” the government source said


Doing something, yes....but pretty far from "doing it all" if you ask me!

If they were doing it all, I wouldn't be spending a small fortune heading to the US for the procedure...
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Postby Doodles » Wed Mar 23, 2011 9:41 am

I neglected to mention in my post that the MS clinics have an organiztion, Canadian Network of Multiple Sclerosis Clinics - the contact person is Mark Freedman.
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Postby Mathd » Wed Mar 23, 2011 11:21 am

doing politics on th back of sick people... no comments! they had the opportunity to do something months ago, and now they think we'll be stupid enough!!!
let's throw the actual government out and elect anyone else!!!

Mark Freedman as a contact! yeah right! he's a world class moron and he's on conflct of interests!
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Postby thornyrose76 » Wed Mar 23, 2011 12:15 pm

Kleiner wrote:I particularly enjoy the quote at the end from the Government source:

“We’re doing it all,” the government source said


Doing something, yes....but pretty far from "doing it all" if you ask me!

If they were doing it all, I wouldn't be spending a small fortune heading to the US for the procedure...

Here, here!
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Postby jackiejay » Wed Mar 23, 2011 1:41 pm

sounds like pure political posturing....throw a bone to the MS community.....vote for us, we care about you...

did I read that Dr. McDonald is doing a clinical trial?....
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Postby Blaze » Wed Mar 23, 2011 2:24 pm

jackiejay wrote:
did I read that Dr. McDonald is doing a clinical trial?....


Dr. MacDonald has been trying for months to launch a double blind clinical trial, but has not been able to receive approval or funding.
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Postby 1eye » Wed Mar 23, 2011 8:03 pm

I saw the surveillance on the National tonight. They included a 3d vein photo, and then called it 'so-called'. Like pulling out of Afghanistan, I am suspicious of announcements that are made on the eve of an election. They claim they are going to follow us. Well, if they try to follow me, I'm going to call the police.

I think the panel has already decided how to proceed, based as we know, on much input from patients. Oh well.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Chrystal » Wed Mar 23, 2011 10:01 pm

1eye - I didn't think I'd be able to smile or laugh today, I was so upset about this National BS Registry. That's all it could be, with the likes of Freedman involved. Then I read your line and I burst out laughing...oh and it felt so good!!! "Well, if they try to follow me, I'm going to call the police."

Thank you for the laughs and the wonderful idea. I will also call the police if they try to follow me :)!!

Take care and keep well.
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Postby thornyrose76 » Thu Mar 24, 2011 12:06 pm

Tee, hhee!!!!!! Funny postings! :P :P
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Postby 1eye » Thu Mar 24, 2011 12:42 pm

That's all it could be, with the likes of Freedman involved.
Let's lay off the poor sod awhile. Dr. Code hinted he's had to prescribe himself some bodyguards. I don't want things to get more weird than they already are.

"When the going gets weird, the weird turn pro." -Hunter S. Thompson

edited this to correct quotation...surprised nobody caught it.
Last edited by 1eye on Thu Mar 24, 2011 3:36 pm, edited 1 time in total.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby PCakes » Thu Mar 24, 2011 2:51 pm

1eye wrote:Dr. Code hinted he's (Dr Freedman) had to prescribe himself some bodyguards.

To protect him from the truth?

All kidding aside.. I am sorry that there is a need for this.
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Postby esta » Fri Mar 25, 2011 2:05 pm

i'm not sorry for him in the least...we could have had the cure by now!!!!!!
PPMS. Liberated Katowice, Poland
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