Parliamentary debate re CCSVI

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

Parliamentary debate re CCSVI

Postby Brightspot » Mon Jun 14, 2010 4:39 pm

Right now there is a debate happening in the Canadian federal parliament.
(google CPAC to get live coverage)

We have heard the federal Health Minister and several other ministers quoting the MS Society regarding the need for further study prior to allowing persons with MS access to vascular medical care.

Clearly this Society has a lot of power over the lives of persons with MS.

I for one will be the government with the feedback that the MS Society does not represent me, and that I consider this society to be acting against the best interest of Canadians with MS.

SHAME ON THE MS SOCIETY FOR MISINFORMING OUR GOVERNMENT AND CAUSING HARM BY PREVENTING PERSONS WITH MS FROM OBTAINING VASCULAR MEDICAL SERVICES!!!
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Postby concerned » Mon Jun 14, 2010 4:42 pm

Is "more research needs to be done" really misinformation if all the Dr.'s looking into this all seem to claim more research is needed? (well, maybe not the doctors charging exuberant fees.)
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Postby garyak » Mon Jun 14, 2010 5:17 pm

I've been watching for almost 2 hours now. Liberal MP Kirsty Duncan has performed a heroic effort in delivering her passionate message about the need for access to ccsvi testing and treatment in Canada - wow what a great politician.
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Postby Villagemaid » Mon Jun 14, 2010 5:54 pm

I agree....Kirsty Duncan is AMAZING.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Villagemaid » Mon Jun 14, 2010 5:58 pm

Larry Miller is an advocate of ccsvi
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby NormB » Mon Jun 14, 2010 8:12 pm

I believe the honorable Mauril Belanger representing Ottawa-Vanier was the most up to date and on the money with his presentation and responses beside Dr Duncan of course.

Let's see where this all will bring us. Holding our breath might turn us blue if you ask me since the Conservatives who are in power feel they're doing enough as it stands.

Take care all


Norm
Last edited by NormB on Tue Jun 15, 2010 4:21 am, edited 1 time in total.
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby nicknewf » Mon Jun 14, 2010 8:21 pm

There was a lot of misinformation from the government side tonight, especially the parliamentary secretary - but this is a technical topic for them. Dr. Duncan was great through, from when I joined, I heard:

1. That CCSVI is the treatment and the disease? Corrected a couple of times.
2. That angioplasty on veins is brand new. Corrected twice. First with references to venoplasty outside the neck.
3. That venoplasty in the neck is new. Corrected.

The displeasure voiced in the house directed at the neurology community was heartening; especially Kirsty Duncan's call for Zamboni, CCSVI experts and vascular specialists to be in on the government meetings which are planned. One of the conservatives asked that neurologists put aside their egos. I'm glad Parliament was able to do this - and I really hope the flood gates finally crack.

It was all wonderful; and I can't wait to listen to the Zamboni presentation to the subcommittee tomorrow.
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Postby Villagemaid » Mon Jun 14, 2010 8:39 pm

I found that most of them were just "reading" their debate comments....I don't know how many of them said "ccvi" or "ccvsi"..........
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby FlashHack » Mon Jun 14, 2010 10:09 pm

Any of you Canucks know how to find these recordings on the CPAC site? This Yank can't seem to find any. Can you only watch it live?
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Postby nicknewf » Mon Jun 14, 2010 10:35 pm

Flashhack,

It should ultimately be in the parlvu event centre. Just not loaded yet - night sittings of the house not that normal - but I would expect to see it here soon.

http://parlvu.parl.gc.ca/Parlvu/DayView.aspx
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Postby SilentNewfie » Tue Jun 15, 2010 7:28 am

http://parlvu.parl.gc.ca/Parlvu/Content ... ityId=6402

8 hours 10 minutes in is where it starts.

This is the link to the video.
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Postby TMrox » Tue Jun 15, 2010 7:56 am

The parliamentary discussion about CCSVI of 15 June is being broadcasted live right now at:

http://parlvu.parl.gc.ca/Parlvu/Content ... ityId=6410
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Postby esta » Tue Jun 15, 2010 9:56 am

hi to all
this debate was awesome. i just sent an email to dr. k duncan thanking her for her invaluable input and cc'd my MP. could we all do that?
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Postby mangio » Tue Jun 15, 2010 10:19 am

I am sending her a special thankyou and roses. Her efforts are
beyond words. As for the child from the national office she
was buried and deservedly so.

I couldn't be more disappointed in the national stance. We in fact
received e-mail post broadcast
that individuals here in the west will be launching
their own new ms society (different name of course) with
very heavy focus on vascular connections and treatment.

We raised 7 million
dollars last week out west for ms society. That will be challenged
enormously in the months to come.
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Postby mangio » Tue Jun 15, 2010 10:30 am

sorry I wrote last week, it should read last year.
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