Obfuscation means to make something hard to understand--literally, to obscure the real meaning. This can be done using a bunch of jargon or extraneous information, meant to purposefully confuse people.
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7439
One of the NMSS funded CCSVI research papers will be presented at the upcoming American Academy of Neurology meeting in San Diego in March. The conclusion of the Texas-based doppler study which examined 276 subjects and is published in the Annals of Neurology was: we just can't replicate Dr. Zamboni's doppler studies. Because we cannot see what he saw, CCSVI is probably not part of the MS disease process.
But I read the full paper, not just the abstract or NMSS press release. Carol found it online, and you can read it to:
http://onlinelibrary.wiley.com/doi/10.1002/ana.23839/full#jumpTo
The investigators decided not to use the same tools Dr. Zamboni used. When the first team from Cleveland used the Quality Doppler Processing of the Esaote transcranial doppler machine, they actually found reflux in the deep cerebral veins of pwMS. Exciting, right? No. They then decided not to use this machine, and opted for their traditional dopper machine to evaluate the deep cerebral veins. And the Texas team decided not to purchase the Esaote machine. And only then, when they used their own technique, there was no reflux. That's right---they threw out Dr. Zamboni's machines and technique-- because it actually showed deep cerebral vein reflux. The obfuscation here is--Dr. Zamboni and BNAC are the only ones using this new technology--therefore, it is not standard, and they will not use it.
A new ultrasound technique, quality Doppler processing (QDP) is used by some for CCSVI reflux screening. QDP has not been validated against traditional duplex ultrasound and is only available on the Esaote-Biosound MyLab 25Gold device (Esaote North America, Indianapolis, IN). Fox et al compared traditional transcranial Doppler (TCD) ultrasound with QDP in 20 MS subjects undergoing CCSVI testing.[17] Seven of the 20 were found to have intracranial reflux on QDP, but none demonstrated reflux using traditional TCD duplex imaging. Thus, inconsistent and nonstandard ultrasound methodology in combination with nonvalidated equipment have led to uncertain accuracy of the proposed criteria.[18]
That's like telling the inventor of the telescope that Neptune does not exist because you cannot see it with your naked eye.
Not only did they waste our time and money by not using the correct machine, but they also failed to investigate what they actually found.
The researchers found venous malformations in the veins of pwMS. The Cleveland group found a newly discovered jugular vein valve (never seen before!!) and the Texas group saw webs, septum and all kinds of things inside the jugular veins of people with MS. Things that have not been studied before. Did they investigate further to learn how this might change the blood flow patterns in pwMS? Was their curiosity piqued to find these new venous malformations?
No. They decided not to comment on any of this, since it's all new, and they really don't understand it. It simply must not matter. They use obfuscation to make these venous malformations appear unimportant. Because they do not understand how venous malformations change bloodflow, it must not be of any value to pursue this further.
Fourth, our measurement technique of venous blood flow velocities did not allow an estimation of cerebral blood flow volume as described by others.[3] Fifth, our measurement of B-mode jugular stenosis (Zamboni criterion #3) did not include assessment of venous anomalies (eg, vascular webs, dysfunctional valves), which were not described in the original articles,[1, 2] but later added to consensus protocols not available at the time we began our study.[15, 16]Therefore, we cannot comment on the prevalence of these anomalies or whether they exist to a greater degree in MS compared with non-MS subjects based on prospective and systematic evaluation by NS alone.
That's like finding the Dead Sea scrolls and throwing them out, because no one in your circle of friends knows how to read the ancient text.
Dr. Zamboni has discovered venous malformations which impact cerebral bloodflow and perfusion, and neurologists don't seem to want to bother with it. Why don't they simply ask him? He has a phone and a computer. Heck, he even has a vascular lab at the University of Ferrara, with an Esaote machine they can borrow.
Here is someone in the US who understands and studies truncular venous malformations and blood flow in CCSVI. He's at George Washington University. He can explain this:
link to Venous Embryology by Dr. B.B. Lee
I have a hard time understanding how scientists and researchers can do this. How can anyone, in good conscience, not try to get to the bottom of the MS disease process? How can they not wonder if venous malformations and collateral venous drainage are impacting delicate brain tissue and the blood brain barrier? Where is the curiosity? Where is the desire to collaborate? Why the need to obscure the facts?
The only thing that we keep coming back to is the reality that they are stuck with their lousy disease model. Making drugs that cure EAE in mice, but don't do much for people with MS. Basing their science on this one inaccurate model. And selling these products to people with MS to the tune of 15 billion dollars a year. Because the autoimmune ship has sailed too far, they refuse to alter the course and look at new modalities. It's just not worth it to them.
But it matters to you.
Please, take care of yourselves and your loved ones. Keep moving, eat whole food diets, get plenty of nutrition from antioxidant rich plants, get your vitamin D levels checked, don't smoke, talk to a vascular doctor familiar with CCSVI about venous malformations. And most of all, support researchers who care about all of this. The ISNVD researchers who just met in Poland, and groups like CCSVI Alliance--who are putting these doctors together.
There are more answers ahead, but we cannot afford to waste any more time and money with willful obfuscation.
You are too important.
Joan
