I am underwhelmed. I am frustrated to see that every one of the seven studies is seeking to "redo" Dr. Zamboni's scanning --in an attempt to prove or disprove his discovery of CCSVI in people with MS. Two years is a long time for MS patients to wait while new doctors clarify something that Dr. Haacke, Dr. Dake, Dr. McDonald, Dr. Simka and Dr. Sinan and others are already seeing in 90-100% of pwMS. I am also frustrated to see that two of the US grants go to neurologists--Dr. Fox and Dr. Wolinsky--these gentlemen are brain specialists who do not utilize doppler technology or magnetic resonance venography technology in their daily practices. I would hope that at the very least they will be partnering with vascular doctors and doppler technicians in order to proceed with their studies. Dr. Zamboni's protocol is very specific- and the instruments and technology needed to test venous return are not something that can be mastered overnight. In looking at the grant recipient list--I can only think of Dr. McDonald's quote---we need plumbers looking at MS patients' veins, not electricians. I see too many electricians on this list.
On the plus side--it is good to see money committed to furthering studies for children with MS--a group that is often overlooked in research. I remain optimistic, and believe the best of our US and Canadian MS Societies. I am gratified to see that the voices and requests of patients for further studies into the venous connection to MS has been heard. The monetary response is not as robust as we had hoped, but the dialogue continues.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09