Dr. Zivadinov answers "Internet questions"
http://cme.bnac.net/ccsvims/index.php?v=5
This is Part 5 of the full presentation:
Why were borderline cases put in negative group? 52 cases were boderline because they could not do all of the testing for criteria #2. (This was for REFLUX in the deep cerebral veins, checked by transcranial doppler.) Dr. Zivadinov considers this "questionable." He found a 52% chance of error. So they decided NOT TO ASSESS this criteria and put them in the BORDERLINE group to take the "conservative" approach. (This meant that 52 pwMS who very well may have CCSVI were put in the "no CCSVI" column.)
BUT THIS IS DIFFERENT from what Dr. Zivadinov said at the MS webinar, where he stated that this problem WOULD BE WRITTEN ABOUT in the published research. And the TCD testing would be worked on. BUT THIS DIDN'T happen. There is no mention of the TCD problems in the published research.
Why were family controls included in "healthy controls?" 48 family members were included. 150 non-familial--and an equal percentage who had CCSVI in family as CCSVI in non-family. So this was considered a non-issue.
Pediatric cases were 50% positive...some pediatric healthy controls and neurological disease had CCSVI- all of this lead to their decision that CCSVI is not causative of MS.
Why did they interpret their research regarding causality- why is that necessary?
62% of MS patients had CCSVI.
CCSVI may contribute to MS progression, may be a consequence on MS progression.
CCSVI is more prevalent based on length of disease.
Dr. Zivadinov quotes Dr. Eliot Frohmann---"A good scientist should have a right to change his mind." We have a right to report the science which ever way it goes....
GREAT patient questions---
one gentleman asks to know if he has CCSVI, since he has been tested by BNAC, but they don't give him results? He wants to know what he has to worry about with his health.
Hypoperfusion is discussed....there is a global atrophy of the brain and perfusion. Still being researched.
What is the "gold standard" testing? There is a mismatch between internet reports and what BNAC is finding. Dr. Siddiqui is doing venography to further understand the collaboration, important to see corrolation with doppler, MRV and venography. These are all tools to look at veins in slightly different ways. BNAC is only in "information gathering" stage....five years down the road, we'll know what you need to be tested. At this point, there is no "gold standard."
Dr. Zivadinov acknowledges Karen, their doppler US technician, who he calls the "best in the world", and she is training doppler technicians around the world.
Dr. Zivadinov--Very good to hear voices of patients...to provide feedback.
He thanks those who are part of study and receiving placebo....