The commercialization has gotten ahead of the process. I do not think any advertising is appropriate.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
magoo wrote:The fact of the matter is that if there weren't so many seeing symptom improvements, CCSVI would have gone to the wayside like beestings. Having come from the days of hoping to find a doctor to even look at the research, to having treatment and doctor choices, I welcome the websites and information from doctors. Yes, we are a long way from understanding how all of this applies to MS. Yes, we are in the phase of discovery. Yes, those who choose to go for treatment now are guinea pigs. But, most of us have been guinea pigs before and are willing to try things because this disease is just awful. Criticize the doctors profiting, the methods unrefined, etc., but for many, this has given hope and a better quality of life to those guinea pigs. I am really glad for the MS advocates and the doctors treating CCSVI who have taken so much heat and have not given up.
The value of hope cannot be overstated.
Marc, we need a letter from all patients worldwide asking these luminaries to come to the table and help us do the science right. (hint hint...) Once they agree to come together. NIH will pay for a working group to produce a document outlining the goals and outcomes that research has to have to be significant. With that document attached and showing that they comply with said goals, most quality projects will be funded by NIH. This work is extremely important. MS is just a small part of CCSVI.
How many proper not-for-profit registered CCSVI friendly patient groups do we have worldwide? I bet the leadership from all those groups could come together pretty quick and agree on a letter. Dr Burks said that would be very powerful and the science oriented neurologists would have a hard time saying no. Annette Funicello's Research Fund has agreed to promote this and lend their name to the cause. Her focus has always been 100% proper research and international in scope.