This Is MS Multiple Sclerosis Community: Knowledge & Support

This does not sound like a biased response to me to me but of course I am not aware of the thousands of various groups whose sole purpose is to discredit CCSVI.

April 20, 2011 Dear Ashton, Your interest in our multiple sclerosis (MS) research over the past years and the collegial relationship we have developed has been much appreciated by us both. It was our pleasure to visit you in Calgary last year and speak to the people there about our research. We regret that you and your Board are disappointed that the findings or interpretations of our published research in the April, 2011 issue of Neurology did not produce the results you had hoped for. We have both read your detailed critique on Facebook of our peer-reviewed paper and recognize that you have issued very serious charges about the integrity of our research and the conclusions we have drawn. We believe, however, that the best forum in which to conduct this very important debate would be a Letter to the Editor to the Neurology journal, a step we encourage you to take. In this way, your concerns will go formally on record to others in the broader medical community, who can then evaluate your criticism and respond. We will have an opportunity to respond as well, also on record. This is the way science advances. We hope you will accept the invitation to use this recognized way of refuting our findings. We also feel this method of criticism will be the most effective way to achieve our common goal of advancing the understanding of venous constriction and how that may be related to MS. This CCSVI paper we published is one of many we are working on. When taken individually, each paper may have conclusions that could seem to contradict findings of the others. Some have shown a positive correlation and others did not. We are all still at the beginning of understanding CCSVI, so it is premature to issue any definitive pronouncements one way or the other. The essential message we want to communicate is this: So far, we are finding a higher prevalence of CCSVI in patients with MS but not to a degree that would indicate that CCSVI causes MS, the hypothesis we are testing. However, based on this particular CCSVI study and others we have done and others not yet published, we are learning that regardless of whether or not CCSVI causes MS (as this study suggests it does not), CCSVI is a factor for a significant number of MS patients. That makes this particular study and continued research very important to understanding how to help MS patients and others who have CCSVI. Whatever the final outcomes are of this debate and our research, please recognize the truly monumental ways The Direct-MS Foundation has contributed to the understanding of MS and possibly to other diseases and the understanding of aging. We regret you declined the request for Robert to come to Calgary to discuss this with you in person. Although you have broadcast your accusations on Facebook and they are circulating around the Internet, we wanted to respond to you with an invitation to come visit us in Buffalo instead. We hope you will accept. With best regards, Bianca Weinstock-Guttman, MDRobert Zivadinov, MD, PhD, FAAN

You highlighted the very sentence that is offensive. It is invalidating of the complexities of the objections to the spin that has been given to Dr. Zivadinov's results and instead demeaningly assumes that what is being felt is disappointment at not getting what was wanted.

I do not see this as offensive at all. From the beginning, whenever a study does not 100% support the CCSVI hypothesis, every effort is made to discredit something about the study. Some of the reasons for a "negative study" have been: pharma conspiracies, neuros afraid of losing money, lack of experience on the part of the investigators, etc. I have NEVER seen a "positive study" ever be even REMOTELY questioned so why the different standards? Blame Zamboni for setting the 100% standard not investigators who, after objective testing, can not even get close to that number.

You may have a point about the studies with negative results receiving more scrutiny than others. They should all be scrutinized, although not with an aim to discredit them all, but so that they can all be well understood.

As for what I objected to in the statement from Dr. Zivadinov, Dr. Embry is on record last spring talking with excitement about the same results, it's incorrect and oversimplifying to pass off his reactions as disappointment in the results.

I just found this CTV news clip which puts the Buffalo study in a much more positive light for those of us with MS.

http://watch.ctv.ca/news/health/avis-favaro/#clip450869

WeWillBeatMS

I am not as pessimistic as many people are about the BNAC results. The correlation between CCSVI and MS is clearly demonstrated. The conclusion from the data that CCSVI is not the cause of MS must be made however. If the data are wrong then there must be another blinded control study to prove that. Data from IRs performing procedures cannot be scientifically accepted because they are not blinded and have as much an economic bias as do the neurologists. Did nature make neurologists more evil and nefarious than IRs ? I am waiting for more data from all the CCSVI studies. Maybe MS does cause CCSVI, and CCSVI causes fatigue, etc.

I would urge everyone to read the 2010 Pulitzer Prize winning book "The Emperor of all Maladies" by Siddhartha Mukherjee. I am about 2/3 of the way through. It is a fascinating look at Cancer research and political rivalries. It has certainly given me a new perspective on MS research and CCSVI.

MY disclaimer is that I have had 2 CCSVI procedures. One in August 2010 and the other in March 2011. I was found to have stenosis in all 3 veins, both IJVs and my azygos. I have one occluded stent that I need to have fixed somehow. My initial response to the procedure was very good. Today it is not so good maybe due to the occluded stent.

I am waiting for more papers... I am trying to keep an open mind. May we all find the answers we are looking for.

ozarkcanoer

The unfortunate thing is that many treatments which are readily accepted also have had negative studies done about them. The cries of conspiracy and bias just make CCSVI look less about science and more about people's emotions.

Well said, ozarkcanoer.

Bianca Weinstock-Guttman, MDRobert Zivadinov, MD, PhD, FAAN

They are pawns of Big Pharm. Criminals period. If a drug helped as much as CCSVI procedure has done The drug companies, the socities would be all over it calling it a breakthreough. You know it and so do I.

Gord

I like Dr. Dake's phrase that CCSVI may turn out to be a promoter of MS. This more middle-ground line of thinking seems to be missing from the BNAC interpretation, I don't know why.

Dr. Simka and Dr. Siskin have published on CCSVI. Dr. Mehta presented his early trial outcome at ISNVD. These doctors are all treating but their work still adds to the body of knowledge.

We've seen that even the journals are acting oddly, with rushed acceptance of opinion pieces or negative findings against CCSVI. Strange times.

If not nature, perhaps nurture?
I appreciate your point though.

Ozarkcanoer....I too have an occluded stent in my left IJV, problems with the valve. There is flow out of the top of the vein into collaterals. There are some symptoms back. The valves in the right IJV and azygos are going to eventually give me problems. For now, I will sit and wait to see what will becomes of it all....things are moving rapidly and hopefully there will be a new dawn for us soon.

Cece.... Dr Dake's interpretation may also be true. I wish I knew. I know that BNAC really went out on a limb to investigate CCSVI. I know they were afraid of being the laughingstock and mocked by other neurologists and researchers for doing this. Now they are being mocked by patients. And no doubt BNAC in the past has received Pharma money for some of their research, but not for their CCSVI research. I threw a BNAC MStery party with my sister-in-law and raised $4500 for BNAC research with matching funds from Direct-MS. It was a lot of work. So I may be biased in favor of BNAC. They may be right or they may be wrong. Let's have another large blinded clinical trial. Maybe the other Dr Z (Zamboni) will do it If there were money in it I am sure many research sites would jump in with both feet. I know that Washington University in St Louis applied for one of the MS Society's grants and lost.

ozarkcanoer

I think someone should do a study of those who continue to have problems after CCSVI treatment, and do an honest investigation (forget about blind leading the blind for a minute or so) into why these problems continue to exist, from only a vascular health viewpoint.

If someone discovers Copaxone causes restenosis or thrombosis to be more common, so be it. If, however, a wrinkle is found to the usual procedure, or a new physical pathology we didn't know about, or anything that might result in new or better treatment, I don't think there'd be any facebook posses forthcoming.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Once again you are assuming vascular health (or dysfunction)creates the problems "fixing" CCSVI is supposed to address. Some people say angioplasty has allowed them to rise from their wheelchairs while others claim it improved their eyesight. For others it improves the sensation in different parts of their body while some people with ms have a decrease in numbness. Are you going to pick and choose what symptoms we look at or do we just say whatever symptoms MS cause are open game? That is of course assuming CCSVI has anything to do whatsoever with MS which has even yet to be proven.