PETITION FOR CANADIANS

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

PETITION FOR CANADIANS

Postby Alica » Sun Dec 13, 2009 11:06 am

A petition is being circulated for Canadians that wish to push Health Canada to step up investigation of CCSVI and to make the liberation treatment available to people with MS: http://www.gopetition.com/petitions/the ... edure.html
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Postby oreo » Sun Dec 13, 2009 5:18 pm

A nice sentiment but largely a waste of time.

Health Canada does not conduct research of this kind. That will be done by doctors in a university setting. At best, Health Canada will review their results and make recommendations to the provinces.

It also is not in the position to make any kind of treatment available. That is the responsibility of the provincial governments who are the authority in charge of the provision of health care.
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Re: PETITION FOR CANADIANS

Postby frodo » Mon Dec 14, 2009 6:16 am

Alica wrote:A petition is being circulated for Canadians that wish to push Health Canada to step up investigation of CCSVI and to make the liberation treatment available to people with MS: http://www.gopetition.com/petitions/the ... edure.html

There is no need for more research. If somebody just complains about suspecting vascular problems, they should get their veins tested. And if they find something, they will have to fix it.
The only problem is that doppler at this moment is not reliable.


I am not Canadian, but I expect you have that covered by your insurance.
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Postby Johnson » Mon Dec 14, 2009 12:05 pm

I am not Canadian, but I expect you have that covered by your insurance.


Not at this point - at least not before we wrest this away from the MS clinics and neuros. Most GPs here so far are dumb-struck, and are not even sending us for scans. We can go around them now for the scans, the trick is to get referred to the vascular guys.

I have a connection, who has connections (ex-husband a GP, friends and associates in neurology, radiology, etc. She is working on getting me the necessary attention here. I am hoping to be able to give up my spot with Dr. Simka for someone else.

I think we'll prevail very soon.

Semmelweis, indeed!
My name is not really Johnson. MSed up since 1993
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Re: PETITION FOR CANADIANS

Postby thisisalex » Mon Dec 14, 2009 1:18 pm

Nice petition, but i think wording is VERY important here, if we dont want to be attacked. my few cents:

- MS is still an autoimmune illness! dont say its not...
- deformities are not just in jugular veins ...
- not just stents were used ( ballons also)
- "to allow the free movement of blood to the brain" exactly the opposite: to allow good draining of the brain
- never use the word "miraculous" :) its about science

it would be nice to agree upon wording before let it go live
i appreciate your efforts, keep going Alica!

Alica wrote:A petition is being circulated for Canadians that wish to push Health Canada to step up investigation of CCSVI and to make the liberation treatment available to people with MS: http://www.gopetition.com/petitions/the ... edure.html
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Re: PETITION FOR CANADIANS

Postby Alica » Mon Dec 14, 2009 8:27 pm

Nice petition, but i think wording is VERY important here, if we dont want to be attacked


Oh, come on. The person who started this petition doesn’t appear to be a lawyer or a medical doctor. I suspect, that this person is a MS sufferer, an average Joe, just like many of us on this board. The point is to be heard. Period. We can’t afford to sit back, be quiet and do nothing. Although I agree that the wording could have been a bit better, the basic idea is what counts. This person’s heart is in the right place. Everyone who signed the petition is well informed and knows exactly what’s going on. At this point it’s way too early to be worried about the right wording. When that time comes I’m sure that the lawyers and doctors will have their final say.

As Frodo suspected, doppler is covered by our insurance, but unfortunately only those unreliable ones.
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Postby youbetcha » Thu Jan 07, 2010 10:17 am

Hi,

This may be a silly question(s), but I'm curious so I will ask, who is responsible for the collection of names, will this person submit all these signatures, and when?

I'm sure that many of us are anxious and wondering what the "next" step is.

Thanks,
M
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Postby markus77 » Thu Jan 07, 2010 11:43 am

agreed alica. we need to focus on the big picture not the small trivial things....
STAY REAL MY FRIENDS

dx 1989, spms
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Getting the word out.

Postby Ruthless67 » Thu Jan 07, 2010 12:05 pm

Hi All,

I don't really feel confident to talk with professionals about CCSVI, though making them aware of CCSVI and providing them with info & links is something I am doing. I’m also trying to do my part to get the word out to the US Media regarding CCSVI. If we can just get more and more of them aware and following the trials & research more closely like we are, it should get something going on down here as well! I’m trying to keep a running list of media contacted by e-mail and snail mail. You can help out by adding your contacts to the master list. And then printing it out and sending everyone on the list a letter. Keep it simple, to the point and use the some letter for each of the contacts, then a week or so later, re-write the letter and send it out again. It only cost you your time when it’s an e-mail! :lol:

http://www.thisisms.com/ftopict-9610.html

Thanks,
Lora
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