Our NMSS and a puzzling review of CCSVI

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

Postby beerduff » Tue Jan 05, 2010 10:17 pm

"As President and CEO of the MS Society, I am aware of the tremendous interest across Canada and around the world caused by the recent news coverage of the CCSVI study. Indeed I share your excitement and hope in the preliminary findings of this study. I also celebrate and respect the integrity of our research funding programs which will continue to ensure that the very best projects are selected and supported."

Yves Savoie
President and chief executive officer
President, Ontario Division

Keep the faith.
This is from the engine driver.
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Postby Mechanicallyinclined » Tue Jan 05, 2010 11:04 pm

beerduff wrote:"As President and CEO of the MS Society, I am aware of the tremendous interest across Canada and around the world caused by the recent news coverage of the CCSVI study. Indeed I share your excitement and hope in the preliminary findings of this study. I also celebrate and respect the integrity of our research funding programs which will continue to ensure that the very best projects are selected and supported."

Yves Savoie
President and chief executive officer
President, Ontario Division

Keep the faith.
This is from the engine driver.


Okay I try not to be negative towards our MS Society in Canada but......
If this is the real Yves Savoie that has responded with the above quote, you couldn't even take the time to address us with your own words on this topic. These are the same words that were posted on the MS Society of Canada websight shortly after the W5 story aired and you guys had to go into defensive mode. I remember that same statement. What did you do? Cut and past your message?
I don't know what to say. I'm speechless and ticked off! I don't want to throw gas on any fires here, but I would hope the real Yves Savoie would be able to address us in his own words. Excuse my ranting everyone. I'm speechless. I'm going to leave now before I say something I shouldn't.
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Postby katie45 » Wed Jan 06, 2010 2:46 am

Mechanic, go your best! We have suffered in silence and terror long enough...THIS IS IT !
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Postby markus77 » Wed Jan 06, 2010 7:05 am

what a naive little man. placebo affect i believe, for the most part only occurs with drugs. did you ever hear of a person having open heart sergury and feeling better after only because of the placebo affect.

" National CCSVI Society " roles off the tongue.
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Postby LR1234 » Wed Jan 06, 2010 7:08 am

:) Fancy setting it up Markus?:) How about you Cheer??
Last edited by LR1234 on Wed Jan 06, 2010 9:45 am, edited 1 time in total.
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Postby Mechanicallyinclined » Wed Jan 06, 2010 9:30 am

I don't know that setting up a" CCSVI Society" would be as easy as it sounds. I think Cheerleader has enough on her plate to think of something like that. You do excellent work lady!
In defence of the MS Society I know they do good things in areas even beyond research. I know they have to be careful about throwing money around. They try to make sure that money they distribute goes to worthy research. But.............................................
They claim to be the leaders in finding a cure for MS. It's part of the Canadian Mission Statement. I don't know if they knew about ccsvi before W5 aired their show. If they were a leader they would seek out a reputable research facility and tell them that "something looks promising here. Would you get a proposal together and maybe we can help you do this?"
Instead our "leaders" first downplayed Zamboni and the treatments untill they saw the backlash from the public that supports their cause. If we didn't speek up, no doubt none of their support woudl be happening.
If our MS Society was up to speed on what's going on around the world, we in Canada and the US could have had research started this much faster. Mr Richert is basically putting no value in CCSVI. Fine to have aguements against it. Don't put CCSVI under the carpet before you can honelstly prove or disprove it SIR! Now the researchers that are so diligently trying to get thier work underway in Canada may not see money from the MS Society until June I think it is. Mr Yves Savoie and your counter parts in the US Society.....Do you know how irresponsible that is? I have no respect for you. You've lost that.
I apologize to everyone that is running this websight. I know that this is not the purpose that you intend to use this webiste for. I'm just ticked right off and had to speak my mind. I urge everyone to concentrate on doing what we can to move CCSVI forward. All we're doing is getting ourselves worked up and not concentrating on what we should be.
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Postby markus77 » Wed Jan 06, 2010 11:02 am

A JOURNEY OF A THOUSAND MILES BEGINS WITH ONE STEP.
STAY REAL MY FRIENDS

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Postby cheerleader » Wed Jan 06, 2010 3:35 pm

LR1234 wrote::) Fancy setting it up Markus?:) How about you Cheer??


people are talking with lawyers, doctors, professional fundraisers.... I think there is an interest there, we're just trying to figure out the best means possible to utilize all the energy behind this. Stay tuned...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jay123 » Wed Jan 06, 2010 5:32 pm

These emails need to be cc'd to the board of directors too.

One interesting thing I noticed as I just scanned the board though, interesting that the director of the Jacobs MS Center (Dr. Munschauer) is on the NMSS board. That has to make for some interesting discussions with Dr. Guttman at his office! Could it be why the results are taking so long to be reported from the study?
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Postby beerduff » Wed Jan 06, 2010 11:31 pm

[/quote]Okay I try not to be negative towards our MS Society in Canada but......
If this is the real Yves Savoie that has responded with the above quote, you couldn't even take the time to address us with your own words on this topic. These are the same words that were posted on the MS Society of Canada websight shortly after the W5 story aired and you guys had to go into defensive mode. I remember that same statement. What did you do? Cut and past your message?
I don't know what to say. I'm speechless and ticked off! I don't want to throw gas on any fires here, but I would hope the real Yves Savoie would be able to address us in his own words. Excuse my ranting everyone. I'm speechless. I'm going to leave now before I say something I shouldn't.[/quote]

I do apologize for the confusion in my first post.
Just trying to add a positive to all the frustration we are experiencing in Canada and other parts.
I do take people by there word, so i am really hoping that Yves Savoie will start to push this forward.
I will not loose faith in the MS Society to react in the proper fashion, just wish they would quicken the pace.
I am just an onlooker to this terrible disease for the last 18 years watching as my wife has now been reduced to sitting in a wheel chair.
What really surprises me is that we are supposedly living in the wealthiest province in Canada and have been told that we have the best MS facilities and told we have the best MS specialists.But.
Low and behold.
No study or treatment that i know of is been undertaken in any university in Alberta??????
What gives
I do understand your anger and frustration.
beerduff
Just another blue collar worker waiting in the wings for the treatment.
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Postby markus77 » Thu Jan 07, 2010 8:15 am

i can be the poster boy. heehee. but in all seriousness what is troubling to me is the stand the ms society of canada is taking. they should be leading up this research with donations. if it where a new drug i am sure they would be at the top of the list, what frustrating me even more is the fact that they are only donating a few hundred thousand for a CCSVI trial. they spend millions on drug trials. THATS REDICULOUS. further more........ i can go on and on about this with my negative banter but that will get us no where. we need to focus on what is happening or at least i do.
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Postby magoo » Thu Jan 07, 2010 8:27 am

No doubt focusing on what we CAN do is most important. I just want to hold important players accountable. Make sure they know we are watching and demanding CCSVI gets a fair shake.
Joan, is there anything you can't do??? A million thanks for all you have given us. :)
A CCSVI Society would be fabulous!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby markus77 » Thu Jan 07, 2010 9:54 am

qoute

" MS patients in Florida/patients at USF
Share
Today at 11:47am
Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in MS is a new and potentially interesting area in MS research. Dr. Krolczyk will be traveling to Canada in early February to meet with Dr.'s Zamboni and Haacke and other experts to learn more about this new data. We will be holding an education program to discuss this research on February 18th at 6pm at the Byrd Center. Since this is an area of great interest, we expect a high attendance. We respectfully request you limit the number in your party to two. Please RSVP by February 3rd to reserve your seat. Please RSVP via email at rsoares@health.usf.edu or call 813-396-9656 813-396-9656 and leave your name and phone number. Thank you and we hope to see you there! "
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Postby magoo » Thu Jan 07, 2010 10:31 am

Wow, Markus!!!
I wish I could attend. Are you going?
Great news!!!!!!!!!!!!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby markus77 » Thu Jan 07, 2010 11:01 am

unfortunately its on the other side of canada from me magoo. : ( the olympics are also taking place in BC in Feburary. wouldn't some kind of protest or march that interrupts the games be amazing.
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