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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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zap
PostPosted: Wed Feb 10, 2010 6:02 pm 
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Posts: 326
Today I noticed that the National MS Society has started buying paid search results for searches on "CCSVI" and "Zamboni", directing searchers who click on the ads to this page:

http://www.nationalmssociety.org/news/n ... DAoduSy5KQ

Just thought it was interesting!

(example: search for "CCSVI" and notice the top results with the yellow background: these are paid links)

The other group bidding on these terms are these guys:

http://www.essentialhealthclinic.com/we ... ation.html
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lucky125
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PostPosted: Thu Feb 11, 2010 9:22 am 
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Location: USA
It's all about controling the message...

I guess it's better than Teva or Biogen getting into the act. Who knows what info they would try link us to!
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bigfoot14
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PostPosted: Sat Feb 13, 2010 8:48 am 
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Location: State of confusion (Illinois)
I just read the link...

They have expanded the FAQ's but still mention (twice :evil: ) that someone died from the procedure they really need to fix that!!
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whyRwehere
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PostPosted: Sat Feb 13, 2010 8:56 am 
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so, is that where all the donation money to nmss is going?
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msgigiski
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PostPosted: Sat Feb 13, 2010 9:47 am 
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Joined: Wed Feb 03, 2010 4:00 pm
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Location: Minnesota
The money donated to NMSS is used for a wide variety of issues that includes research, MS member support, and advocating for MS patients needs through the state and federal branches.

The money raised through walks, biking, and other fund raising events is not only used to help people with MS live with a greater quality of life, but also to provide money needed to research this unknown disease and how to improve the quality of life of MS patients.

The focus of the money used to be research then patient care, now the focus has shifted to patient care then research.

I do not know the percentage shift. This is just some information I have heard throughout my 20+ years as an MS patient.
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jr5646
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PostPosted: Sat Feb 13, 2010 10:18 am 
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Quote:
FROM NMSS: To get the quickest answers and most reliable results about benefits and risks of any surgical procedure that might attempt to address blood flow in or out of the brain, it is crucial that such surgery be performed only as part of controlled trials, especially since there have been anecdotal reports of surgical attempts to treat CCSVI in people with MS resulting in adverse events, including one reported death.



Not sure about the motives? How is a "controlled trial" any safer? People have died during "controlled" drug trials... and they "still" recommend them...

I just don't get it...

I'm curious now if they are just jumping on the CCSVI bandwagon, since it is recommended staying on MEDS.?

I've never heard of one "MS Patient" benefitting from them? I surely haven't and it's been 9 years for me... I get junk mail, that's it.. wanting $, of course.

I'm sorry, but they will "NOT" get a penny from me!!!!!!!!!!!
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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