pressuring patients into overseas MS treatment

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

pressuring patients into overseas MS treatment

Postby concerned » Sat Jan 08, 2011 6:41 am

Winnipeg-based clinic accused of pressuring patients into overseas MS treatment


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Postby scorpion » Sat Jan 08, 2011 7:23 am

The evolution of CCSVI reminds me of a game I used to play in grade school where we would whisper a secret in someones ear and by the time it got to the final person the initial statement would be completely twisted. In the case of CCSVI the internet has taken up the game of "pass the secret" only the secret is not something harmless like "Timmy'picks his nose while he plays football and rubs it into the ground'. It was more like pssst pssst "A gentleman named Zamboni claims that he can cure MS by simply opening blockages in veins that are easily recognizable via utlrasound". After that it was simply a matter of people on the internet, as the late Frank Sinatra used to say"Start spreading the news"..........
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Postby concerned » Sat Jan 08, 2011 7:26 am

scorpion wrote: as the late Frank Sinatra used to say"Start spreading the news"..........


Liza Minnelli said it first.
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Postby Cece » Sat Jan 08, 2011 8:37 am

If Canada would allow self-paying patients to receive CCSVI treatment in their own country and with follow-up care, we could put this sorry chapter behind us. :(
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Postby EJC » Sat Jan 08, 2011 8:57 am

scorpion wrote:The evolution of CCSVI reminds me of a game I used to play in grade school where we would whisper a secret in someones ear and by the time it got to the final person the initial statement would be completely twisted. In the case of CCSVI the internet has taken up the game of "pass the secret" only the secret is not something harmless like "Timmy'picks his nose while he plays football and rubs it into the ground'. It was more like pssst pssst "A gentleman named Zamboni claims that he can cure MS by simply opening blockages in veins that are easily recognizable via utlrasound". After that it was simply a matter of people on the internet, as the late Frank Sinatra used to say"Start spreading the news"..........


Imagine where we'd be if the whole of mankind had your mindset, I'm not even sure we'd have managed to drag ourselves into the industrial revolution by now.

You remind me of the boss of IBM that thought PC's would never be any use to the public in general....

Or the boss of Decca that though nothing would come of The Beatles.
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Postby Coolcatcarrie » Sat Jan 08, 2011 9:05 am

Haha - I like it ejc! Carrie
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Postby scorpion » Sat Jan 08, 2011 9:18 am

EJC wrote:
scorpion wrote:The evolution of CCSVI reminds me of a game I used to play in grade school where we would whisper a secret in someones ear and by the time it got to the final person the initial statement would be completely twisted. In the case of CCSVI the internet has taken up the game of "pass the secret" only the secret is not something harmless like "Timmy'picks his nose while he plays football and rubs it into the ground'. It was more like pssst pssst "A gentleman named Zamboni claims that he can cure MS by simply opening blockages in veins that are easily recognizable via utlrasound". After that it was simply a matter of people on the internet, as the late Frank Sinatra used to say"Start spreading the news"..........


Imagine where we'd be if the whole of mankind had your mindset, I'm not even sure we'd have managed to drag ourselves into the industrial revolution by now.

You remind me of the boss of IBM that thought PC's would never be any use to the public in general....

Or the boss of Decca that though nothing would come of The Beatles.



Yes if the world were full of people like me we would all be living in caves and pulling each other around by the hair(wonder if that really happened?). EJC my only point was the internet has catapulted CCSVI from a hypothesis into an overnight sensation, that is all. If I have somehow slowed down human progress by saying that, I apologize.
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Postby Blaze » Sat Jan 08, 2011 10:10 am

I saw information about the CCCSVI Clinic and their plans for an ethics board international study posted on another website. Here is a link.

http://ccsvi-ms.ning.com/profiles/blogs ... rd-study-1

I think this information and CCSVI's Clinic's own Canadian website (http://ccsviclinic.ca/) is quite misleading and unscrupulous. They seem to be trying to convey the message that they are in Winnipeg, Toronto and Atlanta, while they are actually promoting treatment in India. Their claim of seeking an international ethics study seems quite unethical to me.

I personally will not consider traveling to India for treatment. Even if I would consider it, presenting themselves in this manner with no mention of India raises alarm bells for me. I called and left a message at CCSVI Clinic yesterday. In the message, I said I have no interest in treatment in India. I have not heard back from them.

I agree with Cece. If treatment were available from qualified physicians right here in Canada, we wouldn't have to travel to India, Egypt, Costa Rica, Mexico, US, etc.

I'm glad the Vancouver Sun reported on this. Thanks Concerned for posting it here.
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Postby thornyrose76 » Sat Jan 08, 2011 12:39 pm

Yes, thanks- Angio for everyone that wants it, needs it in Canada,, period. Vote Liberal next election. Maybe they'll get it right. 8O :?
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Postby scorpion » Sat Jan 08, 2011 5:28 pm

thornyrose76 wrote:Yes, thanks- Angio for everyone that wants it, needs it in Canada,, period. Vote Liberal next election. Maybe they'll get it right. 8O :?


This is not a political issue. The issue is whether angioplasty of the veins is a safe and effective treatment for MS. I would feel much more comfortable if the scientific community pushed for this treatment instead of people in politics.
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Criminals

Postby Gordon » Sun Jan 09, 2011 9:53 am

Again our friends in the old Can west chain of papers find the worst possible news to print on CCSVI.

Cruiminals
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Postby HopingHusband » Sun Jan 09, 2011 5:23 pm

Scorpion,

Dr. Zamboni has never claimed that he has the "Cure" for MS.

He has asked several times for the expertise of Doctors around the world for a assistance in a theory that he has come across and to see if this theory is a possible viable solution that may "assist" in MS.

People have put words in his mouth from day one.
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Postby bwdst6 » Mon Jan 10, 2011 10:01 am

scorpion wrote:..my only point was the internet has catapulted CCSVI from a hypothesis into an overnight sensation, that is all.
It's been almost a half a decade!
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Postby thornyrose76 » Mon Jan 10, 2011 12:37 pm

scorpion wrote:
thornyrose76 wrote:Yes, thanks- Angio for everyone that wants it, needs it in Canada,, period. Vote Liberal next election. Maybe they'll get it right. 8O :?


This is not a political issue. The issue is whether angioplasty of the veins is a safe and effective treatment for MS. I would feel much more comfortable if the scientific community pushed for this treatment instead of people in politics.



Canada's leaders need to take a LEAD on this matter bc it's the only way Canadians with MS are going to get access to what is clearly safe and for some clearly an effective treatment for MS.
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