Suspicions of bias on both sides of the MS divide

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Suspicions of bias on both sides of the MS divide

Postby scorpion » Thu May 12, 2011 5:09 am

“If something is real, you should be able to find it using different techniques,” said Dr. Traboulsee, currently conducting research on the Zamboni hypothesis. “It shouldn’t be completely technique-dependent.”

Dr. Zamboni also has resigned from a major study led by the Italian MS society, citing reasons that society chair Mario Battaglia says “are not justified.” And he has attempted to reinterpret findings that appear to undermine his own.

Last month, one of his closest allies, Buffalo-based neurologist Robert Zivadinov, reported blocked veins in barely half of the latest MS patients he has studied, as well as almost one-quarter of his healthy test subjects.

Therefore, he concluded, CCSVI does not cause MS. But Dr. Zamboni objected, arguing that, even though so few patients had blocked veins, the study actually reinforced his theory.

“He’s shifting his criteria around – first, it was 100 per cent; now he’s taking anything to be conciliatory,” said Steven Novella, assistant professor of neurology at Yale University.

“He obviously is hugely invested in this conclusion.”



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Postby 1eye » Thu May 12, 2011 6:10 am

For one thing, I do not see any suspicions on both sides of anything mentioned in this article. That Dr. Zamboni resigned may indeed mean that he is suspicious but I think that is a bit of an editorial opinion without a quotation to back it up. It seems to me that this article is an excuse to recycle more of the same denial. Indeed Dr. Zamboni and many others have done a lot to quantify the problems of CCSVI using various techniques including plethysmography, MRI, and others.

This newspaper seems to me to have continually suppressed the story of the lawsuit and settlement against Serono, appearing to protect those guilty of kickbacks who might have some influence with it's editorial policy. It certainly does nothing for investors, to have this news not appear in a major metropolitan paper.
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Postby sou » Thu May 12, 2011 9:02 am

So what? Yet another personal opinion based on... ahem! What is it based on?

I was lucky enough to be in the conference room at Bologna. BRAVE DREAMS was discussed extensively. Yes, it is very badly designed and it is going to cast more doubt than solve existing misunderstandings. Who cares about what 'sou' writes on a forum or a sub-journalist on the paper.

I was there. Both Z's had strong disagreements about the study's design. Sham control, anticoagulation therapy, method of measuring the outcome etc etc etc. This is enough to me: Disagreement expressed based on facts and arguments, which made sense.
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Postby Johnnymac » Thu May 12, 2011 9:29 am

I don't understand why it has to be one way or another? Why is everyone so intent on creating a line in the sand and forcing you to decide which line to stand on.

One person points a finger at the Pharma industry, and the response is generally "well look what these other Dr's are doing" (ie, the reference to the Ultrasound machine Zamboni uses, or perhaps the stent manufacturer with ties to Dr Dake).

There are unscrupulous people in the world....surprise. Instead of bringing up tired old editorial pieces can't we just focus on the science please.

This is politics at best, bring something real to discuss, not an opinion piece.
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Postby scorpion » Thu May 12, 2011 9:43 am

Johnnymac wrote:I don't understand why it has to be one way or another? Why is everyone so intent on creating a line in the sand and forcing you to decide which line to stand on.

One person points a finger at the Pharma industry, and the response is generally "well look what these other Dr's are doing" (ie, the reference to the Ultrasound machine Zamboni uses, or perhaps the stent manufacturer with ties to Dr Dake).

There are unscrupulous people in the world....surprise. Instead of bringing up tired old editorial pieces can't we just focus on the science please.

This is politics at best, bring something real to discuss, not an opinion piece.


There are scientific THEORIES about CCSVI but as of yet there is no sound science behind CCSVI so what do we talk about? When we tried to disucss Zamboni's original results people who wanted to talk science were looked at as enemies of CCSVI. When we try to talk science about recent studies undermining Zamboni's original findings we are said to be under the control of pharmas. For all the skepticism on this board it is surprising no one is questioning Zamboni's actions as being a bit desperate. Zamboni, to save face, should admit he was wrong and allow new research to try and build, if possible, on his hypothesis.
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Postby sou » Thu May 12, 2011 9:55 am

scorpion wrote:there is no sound science behind CCSVI


Define the term "sound science". What does it mean for you and what is so un-sound-scientific re published CCSVI research?
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Postby munchkin » Thu May 12, 2011 10:27 am

For myself the bias showed when Neuro's said it wasn't even possible that this was a factor and they wouldn't be part of any research. They claimed the science was bunk and made inaccurate quotes to prove their point.
When the neuro's said that the doppler U/S was dangerous (so we couldn't even get tested)and that our jugulars really didn't affect anything in our brains the bias showed.
When the MS society said that people with MS who presented with jugular blockages should not be treated the bias showed.
When neuro's took claim to every symptom, the bias showed.

These were some of the attitudes in Canada, most people agree that there needs to be research into the issue. The neuro's and the MS society were the exceptions and that showed me where the bias was.
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Postby Cece » Thu May 12, 2011 11:00 am

Here are all the ISNVD abstracts for those looking for the current science of CCSVI: http://ccsvism.xoom.it/Convegno_ISNVD.html

It is part of the dialogue and discovery process when Dr. Zamboni has responded to the studies, since he can offer his knowledge on the techniques. The goal is replication. We've already had that with BNAC. Of course it's not the imaging studies but the endovascular treatment results that I want replicated! :)

It's messy with the discovery process underway and some of us not having the patience/willingness-to-deteriorate/"good sense" to wait ten years.

Have you seen the doppler of my vein with the fixed leaflet, before venoplasty, and without it, post-venoplasty?
www.thisisms.com/ftopicp-164644.html#164644
It is a little less anecdotal when it can be imaged....
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Postby griff » Fri May 13, 2011 6:20 am

scorpion wrote:There are scientific THEORIES about CCSVI but as of yet there is no sound science behind CCSVI so what do we talk about? When we tried to disucss Zamboni's original results people who wanted to talk science were looked at as enemies of CCSVI. When we try to talk science about recent studies undermining Zamboni's original findings we are said to be under the control of pharmas. For all the skepticism on this board it is surprising no one is questioning Zamboni's actions as being a bit desperate. Zamboni, to save face, should admit he was wrong and allow new research to try and build, if possible, on his hypothesis.


I fully agree with you, scorpion. It is quite surprising to me that people here in tims are more interested in "top IR sayings" than discussing science behind CCSVI.

These were some of the attitudes in Canada, most people agree that there needs to be research into the issue. The neuro's and the MS society were the exceptions and that showed me where the bias was.


I do not know any Canadian neuros, but I know some in Europe. They are waiting for results. It is not their fault that proper results have not been published yet. There have been lots of treatment ideas in the past, many of them are quite strange, so do not be surprised that neuros do not support something that has not been proven yet. They can not support different tratment options (many of the are even invasive) every day without any proven track record.

Even a greater issue that dr Z could not yet convinced his fellow vascular specialists about his theory. Those doctors who are doing the CCSVI operaions are very quiet about the science behind what they do.
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Postby coach » Fri May 13, 2011 7:48 am

The auto immune theory for MS has been sucessfully promoted since the development of the immunosuppressive drugs. If one was never diagnosed with RRMS, a 14 year hiatus from first CIS then I am a little confused why these drugs are promoted for MSers since they too are based on a theory. Lots of negative side effects are associated with these drugs. I guess one would have to talk to the users of DMDs to see how they are working out for them. Cochrane review has some interesting information on the DMDs.
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Postby Trish317 » Fri May 13, 2011 8:28 am

griff wrote:
scorpion wrote:There are scientific THEORIES about CCSVI but as of yet there is no sound science behind CCSVI so what do we talk about? When we tried to disucss Zamboni's original results people who wanted to talk science were looked at as enemies of CCSVI. When we try to talk science about recent studies undermining Zamboni's original findings we are said to be under the control of pharmas. For all the skepticism on this board it is surprising no one is questioning Zamboni's actions as being a bit desperate. Zamboni, to save face, should admit he was wrong and allow new research to try and build, if possible, on his hypothesis.


I fully agree with you, scorpion. It is quite surprising to me that people here in tims are more interested in "top IR sayings" than discussing science behind CCSVI.

These were some of the attitudes in Canada, most people agree that there needs to be research into the issue. The neuro's and the MS society were the exceptions and that showed me where the bias was.


I do not know any Canadian neuros, but I know some in Europe. They are waiting for results. It is not their fault that proper results have not been published yet. There have been lots of treatment ideas in the past, many of them are quite strange, so do not be surprised that neuros do not support something that has not been proven yet. They can not support different tratment options (many of the are even invasive) every day without any proven track record.

Even a greater issue that dr Z could not yet convinced his fellow vascular specialists about his theory. Those doctors who are doing the CCSVI operaions are very quiet about the science behind what they do.


That is a very unfair, unnecessary statement.
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Postby 1eye » Fri May 13, 2011 8:38 am

Especially since one whole country full of vascular specialists are only allowed to talk, not to practice, science or medicine when it comes to venous outflow from brains, since brains are beyond their property lines.
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Postby Trish317 » Fri May 13, 2011 8:54 am

1eye wrote:Especially since one whole country full of vascular specialists are only allowed to talk, not to practice, science or medicine when it comes to venous outflow from brains, since brains are beyond their property lines.


I was, specifically, referring to this statement....

griff wrote:It is quite surprising to me that people here in tims are more interested in "top IR sayings" than discussing science behind CCSVI.
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Postby HappyPoet » Fri May 13, 2011 10:20 am

griff wrote:It is quite surprising to me that people here in tims are more interested in "top IR sayings" than discussing science behind CCSVI.

This is just a baseless, argumentative remark.

griff wrote:Those doctors who are doing the CCSVI operaions are very quiet about the science behind what they do.

You're making an indefensible sweeping generalization. Many treating IRs are definitely NOT "quiet about the science behind what they do," and you know this; in fact, you've even posted several times on Dr. Sclafani's thread here at TIMS, so you know this firsthand! You also know that treating doctors from all over the world attend CCSVI symposiums and collaborate with their fellow doctors. This is yet another baseless, argumentative remark.
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Postby 1eye » Fri May 13, 2011 12:40 pm

Oh. I thought you were saying the statement about doctors being quiet about the science was unfair. Certainly doctors outside this country have been vocal, and some inside. But none inside are allowed to speak from experience.
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