I can't tell you how mad this makes me and how poorly I now see the National MS societies. THey Will NEVER get another dime from me.
Today, the gray area has been eliminated. It's now just black and white. We have been patiently waiting to see if the National MS Societies in Canada and the US were actually going to go to the specialists who understand CCSVI in patients with MS. Drs. Dake, Haake and BNAC were all applicants for funding of their research. I know there were others who have studied CCSVI in patients and applied for funding. None of these very experienced doctors were given any money. No vascular doctors were awarded any research grants.
In the US, the money was awarded to 3 "insider" researchers--neurologists and doctors who are on panels, advisory committees for the NMMS, and have received NMMS monies before.
An MS patient of Dr. Aaron Miller's (head neurologist of the NMMS) made this post on ThisIsMS.com tonight-regarding the study-- "I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.
He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it."
So, now we know where we stand. Dr. Miller has made it clear. The research grants have made it clear. The line has been drawn in the sand. These studies are being funded to disprove Dr. Zamboni's research.
Where does this leave us? I believe we are now in the drivers' seat. We are not passengers in the MS Society mobile anymore. They have given us a very clear response. Now we take our money, our influence, and our power for ourselves. We use the connections we have made across national boundaries and languages--here on the internet--we organize and we mobilize money and research and treatment. We work with the vascular doctors, we work with the IRs, we support Dr. Zamboni and all of the brave, pioneering doctors who have taken up this challenge for us. We can do this.
I will not tell you how to donate your hard-earned money and volunteer hours. That's not for anyone to decide but you and your family. But I will tell you that the National MS Societies are not the end of this discussion. Neurologists can disprove Dr. Zamboni's research as much as they want. They cannot change the reality of an IR finding bilateral jugular stenosis. They cannot stop a vascular surgeon from encountering venous reflux. They cannot change a research paper written on discovery of CCSVI in 95% of pwMS. They cannot diminish my husband's return of energy, ability to hike, bike and ski after angioplasty. They cannot change the reality of the hundreds of patients finding symptom relief and remission from their MS. And they will not stop us from speaking out and looking for the truth and healing. Using science, and medicine and our God-given gifts. They may have some money (well, maybe less next year...) but they cannot buy the truth. The truth is free.
Learning and living everyday to the fullest. My MS blog http://mylifewms.blogspot.com/
Post Edited (Dave_NC) : 6/12/2010 10:26:18 AM (GMT-6)