CCSVI in Canada: We need to Challenge the Status Quo

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

CCSVI in Canada: We need to Challenge the Status Quo

Postby mandamurr81 » Wed Jul 28, 2010 10:20 pm

I have been observing the CCSVI debate since '09 and now I am just livid. Initially, I was skeptical of the CCSVI theory, and to some degree I still am. Nevertheless, I like many afflicted with MS, want to be able to explore all avenues. In my typical style, I have sought to educate myself as much as possible about the issue.

I am still not convinced CCSVI treatment (I can't bring myself to say 'liberation treatment' it just sounds too melodramatic) is effective. That said, I should have the right to choose how I am treated. I understand that it is unproven, and if we offered everyone the treatment under the public health care insurance plan the costs would be astronomical. Therefore I do not advocate making it available to all and making taxpayers pay. There is not sufficient evidence at this time to justify that. It would no doubt lead to an undue burden on our healthcare system.

The fact that the treatment is not permitted to be offered here, not even as an elective surgery at the expense of the individual, is monstrous. If it were offered here, it would be significantly less expensive and safer, than traveling to another country for the procedure.

I came across a post from someone else which suggested a class action law suit for discrimination. I actually think this is not a half bad idea. If not for discrimination, than how about the improper use of government authority to restrict us from arranging our medical treatment as we see fit?

Is there anyone out there who agrees? [/i]
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Postby MrSuccess » Wed Jul 28, 2010 11:03 pm

manda - your post is a bit confusing. What is it that you are angry with ?

If .. as you say ... you have been following CCSVI develope ..... then you should not be angry .... but rather .... encouraged.

Have you read Dr. Zamboni's report ? It is vital to understanding the concept and how we got from there to here.

Many , many Doctors have decided to take Dr. Zamboni up on his challenge .... to see if they can duplicate his discovery .

They are finding great interest in the new discovery ..... and reporting some very good outcomes . [ see Dr. Scafalani's opening remarks recorded during his SUNY CCSVI conference ...... you will like that :!: ]

There is more good news than bad ..... in the CCSVI world.

To understand ..... you must read everything by everyone involved with CCSVI . And that takes hard work .... especially if you came into the ballpark with the game well underway :!:

Things are going to get very interesting .... in a hurry .....

Hang in there ..........

Stay Calm ............and ........ Carry On

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Postby Onthelake » Thu Jul 29, 2010 1:28 am

I am also in Canada and can relate to both your comments. The class action is underway in the form of a charter challenge. The lawyer is confident but costly. If you truly want to help go to [url][/url], read the plan and make a donation. We are the group of Canadians who are taking this to the courts on behalf of everyone, and we are paying out of our own pockets, we can use all the help we can get. Personally I hope to be treated in Albany by January but am contributing to this for the greater good. Thanks and good health to you.

I am a great believer in luck, and I find the harder I work, the more I have of it.  Stephen L.
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contact for donations

Postby LivabirdsHubbie » Thu Jul 29, 2010 2:25 am

Here is an idea, why don't you contact STEVEN SIMONYI-GINDELE of the Reform MS Society for a donation from all the proceeds he is getting from people. He alleges that he is a Non-Profit organization for the advancement of CCSVI.
We all think this is a crock and people are just being ripped off...

I think this would be a great cause for HIS Society to put money towards...

Let us know how you get on

check out this forum for info
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Postby erinc14 » Thu Jul 29, 2010 7:03 am

this treatment would cost taxpayers a fraction of what ms is costing then now.
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Postby Fernie12 » Thu Jul 29, 2010 7:08 am

I hear ya, mandamurr81. It's friggin' aggravating. BUT, we have moved mountains to get to where we are! There are only a few mole hills left (I hope)... Write to your MP and MPP...write to the minster of health!!! Let's keep the pressure on. We are moving forward - it is just rediculously slow cuz we're the ones implicated. From an outsider, we are moving faster and faster. We'll get there! LET'S JUST KEEP THE PRESSURE ON!!!
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