cheerleader wrote: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".
Joan, I don't feel duped, I was duped.
Sure, it's not about marketing for those directly affected but there's hell of a lot of shady marketing going on in the name of CCSVI. I hope down the line your efforts wont be crapped on by some who're fighting your corner, but I doubt it.
They tend to call themselves serial entrpreneurs and consultants nowadays, the type that fly with the wind if there a buck in it for them.
I hope CCSVI eventually proves a winner for everyone (patients), I've just found too many red flags in the Pro-ccsvi camp to feel confident this will be anything more than another society party.
It breaks my heart that my sisters biggest fear is not being able to get out of her bed one morning, with her young kids fending for themselves.
Im not one of your "Colin Rose" skeptics, it's just because we seem to have a lions share of professional idiots in the UK, but were only emulating USA's healthcare system, and getting there fast. It looks as though the wrong kind have already firmly planted their feet under the table & it's been that way for a while.