Joan states "Go Local". Damn right but to be effective, this needs to be done in mass, again it won't happen because people are too busy collecting money to sustain an over inflated and overrated industry to consider moving forward constructively.
CCSVI marketing you're seeing now is short term crap, lacks quality and substance, almost word for word like the other million causes out there. When they mix in with real people with real health worries it becomes difficult to oust them because they play on the age old "emotional blackmail, you need us to help you rubbish.
But it is happening. That's reality. Thru the Hubbard IRB and Haacke protocol, there are local sites testing, treating and reporting and more coming. And insurance covers most of it. There are three clinical trials ongoing now in the US, and more to follow. link to Hubbard registry
Please view the video discussion of the Haacke protocol I taped in September at www.ccsvi.org
It would be nice to see a little accountability from both sides. I can tell you now, many CCSVI campaigns couldn't survive it.
Many within these CCSVI groups are genuine but they don't seem to realise they're being used as pawns. The companies behind them and their assiciates are the culptits.
Honest Review of CCSVI+
Dishonest marketing methods
Overcomplicating (it about a blockage that can or cannot be fixed)
It corresponds with common vascular symptoms, dizziness,fatigue,etc.
Venous insufficiency and stenosis are real and quantifiable. They can also be treated. I am sorry you felt "duped"....but it is not about marketing. It is about getting independent research funded. Sadly, pharmaceutical corporations will not be funding vascular/venous research. This is why a group of committed volunteers formed CCSVI Alliance. What began on this site was never done for money. It was done to help pwMS.
Ranting is very easy to do. So is making a website to publish these rants. Putting together researchers, raising funds, amassing volunteers and interacting with doctors and patients is not as easy. Getting active is more than just getting on line. It is interacting with human beings. In person. Without an agenda. CCSVI Alliance "withstands the scrutiny".
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS