Big Day for Canada

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Big Day for Canada

Postby mavis » Tue Feb 08, 2011 8:29 am

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Yesterday - Kirsty Duncan - Etobicoke North, Ontario

Postby Gordon » Tue Feb 08, 2011 10:42 am

Mr. Speaker, today I rise to present yet another petition regarding chronic cerebral spinal venous insufficiency, or CCSVI, multiple sclerosis.



I have presented the latest statistics: 12,500 liberation procedures worldwide in 50 countries; 80% to 97% of MS patients showing one or more venous problems; and one-third of patients showing significant short-term improvement and one-third showing some improvement with liberation.



We absolutely need evidence-based medicine in Canada. That means we must collect the evidence through clinical trials and/or a registry. The petitioners are therefore requesting clinical trials here in Canada with diagnosis, treatment and follow-up."



Kirsty Duncan - Etobicoke North, Ontario



February 7 2011
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Postby Cece » Tue Feb 08, 2011 10:50 am

Arlene Hubbard posted on the facebook site:
1. 35 people attended and Kirsty Duncan was pleased because there are usually no more than 10 people there.

2. Everyone took notes

3. They seemed to like his presentation [Dr. Hubbard's]

4. The most difficult question to answer was regarding normal subjects( there aren't that many that have been tested)

5. There was a discussion regarding should be responsible Provinces or the Federal government.

6. There was a press conference after with lots of reporters, lights and cameras. It will probably be on Canadian TV tonight.
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Re: Yesterday - Kirsty Duncan - Etobicoke North, Ontario

Postby concerned » Tue Feb 08, 2011 11:09 am

Gordon wrote:: 12,500 liberation procedures worldwide in 50 countries; 80% to 97% of MS patients showing one or more venous problems; and one-third of patients showing significant short-term improvement and one-third showing some improvement with liberation.

February 7 2011



12,500 now? Where is the source for this number?


That's at least $125,000,000 so far.
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Re: Yesterday - Kirsty Duncan - Etobicoke North, Ontario

Postby Jugular » Tue Feb 08, 2011 11:21 am

concerned wrote:
12,500 now? Where is the source for this number?


That's at least $125,000,000 so far.
$125,000,000 and at least 12,400 happy customers. Is there a problem?
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Postby concerned » Tue Feb 08, 2011 11:32 am

Only a hundred people weren't happy with their results?


How many people take MS drugs world wide?
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Drug market

Postby Gordon » Tue Feb 08, 2011 12:43 pm

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Re: Yesterday - Kirsty Duncan - Etobicoke North, Ontario

Postby bigfoot14 » Tue Feb 08, 2011 3:07 pm

concerned wrote:
That's at least $125,000,000 so far.


If each of these 12,500 is taking a DMD that costs $1,000 per month (a VERY low estimated cost) for one year the cost is $150,000,000.

So what's your point?
That this is expensive?
That people are being ripped off?
That you think the money would be better spent somewhere else?

I understand that you want to see a full blown, double blind, placebo controlled, clinical study to prove that CCSVI exists...and then another one to see if treating it is a valid option.
I am not smart enough to figure out how such a study would be carried out....or even get approval from an IRB for the invasive procedure being done on the non-treated controls....
Correct me if I'm wrong, but for the study to be blinded to the patients, wouldn't both sets (treated and non-treated) have to be fully under sedation and good luck getting approval for that

All I know is that none of the DMD's work for my wife....so the time she was on Beta-seron and then copaxone was just money and time down the drain .....and cost us significantly more than the procedure is going to
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Postby concerned » Tue Feb 08, 2011 4:22 pm

Propofol is pretty safe and effective.


My point in bringing up the cost is that people say neurologists and drug companies are so anti-ccsvi because they have so much money to lose, but to me it seems to be true of both sides.
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Postby concerned » Tue Feb 08, 2011 4:33 pm

Any news on this session? I've been looking but I haven't found anything yet.
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Postby Cece » Tue Feb 08, 2011 5:53 pm

I am not sure how the number 12,500 was calculated. Imagine if we had the data and results on 12,500 people. (Can I plug the Hubbard Foundation registry? You DO NOT have to be being treated by the Hubbards to be a part of this. Any IR can fill out the form when you're treated. http://hubbardfoundation.org/CCSVI_pati ... intro.html )
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Postby garyak » Tue Feb 08, 2011 6:31 pm

nothing out yet on CTV or CBC.
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Postby beerduff » Tue Feb 08, 2011 10:51 pm

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Postby jackiejay » Wed Feb 09, 2011 4:59 am

I can't find anything in the media today so far...nothing even on CTV.
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Re: Yesterday - Kirsty Duncan - Etobicoke North, Ontario

Postby CCSVIhusband » Wed Feb 09, 2011 5:22 am

bigfoot14 wrote:
concerned wrote:
That's at least $125,000,000 so far.


If each of these 12,500 is taking a DMD that costs $1,000 per month (a VERY low estimated cost) for one year the cost is $150,000,000.

So what's your point?
That this is expensive?
That people are being ripped off?
That you think the money would be better spent somewhere else?

I understand that you want to see a full blown, double blind, placebo controlled, clinical study to prove that CCSVI exists...and then another one to see if treating it is a valid option.
I am not smart enough to figure out how such a study would be carried out....or even get approval from an IRB for the invasive procedure being done on the non-treated controls....
Correct me if I'm wrong, but for the study to be blinded to the patients, wouldn't both sets (treated and non-treated) have to be fully under sedation and good luck getting approval for that

All I know is that none of the DMD's work for my wife....so the time she was on Beta-seron and then copaxone was just money and time down the drain .....and cost us significantly more than the procedure is going to


Great post bigfoot41 ...

That financial stuff is straight off of Colin Rose's blog ... he's big into pointing that out, and so to are his minions. (even though not everyone is paying 10,000$ for the procedure, considering vascular disease is covered by most insurance carriers in the US) I think the point is to show how much money is spent on this (and while 100 BILLION seems like a big number - it's a drop in the bucket of worldwide healthcare costs - even just those related to CCSVI/MS). It's a ploy to dupe those who see a big number and think whoa ... and if you're not really paying attention, it's easy to fall for it.

the skeptics don't know what they want re 'studies' or 'results', aside from - for some reason - not wanting CCSVI to be the answer (or at least that's the appearance to a lot of people, myself included). Like others have said, what percentage of "surgeries" have been double blind tested? Was repairing my ACL double blind tested way back when ACLs were first able to be repaired 20 years ago?

It used to be tearing an ACL meant the end of an athletic career ... now it means 6 - 12 months of surgery/rehab and you're back to normal. Was THAT double blind tested? If so ... I'd love to see the results of those that got the "placebo" ... and how they tested their knee and knew immediately it wasn't "fixed".

HAHAHAHA
Last edited by CCSVIhusband on Wed Feb 09, 2011 6:02 am, edited 1 time in total.
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