ms society dinner

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

ms society dinner

Postby reneelucia » Wed May 05, 2010 7:36 pm

Wow...went to my first ms society dinner to listen to Dr. Cohan, the director of the ms center in portland talk. It was pretty basic stuff until someone asked hime about ccsvi. Aside from making fun of Zamboni's name he said that "Zamboni claimed to cure everyone, including his wife with ms" He said the study at the university of buffalo was rigged because the results depended on how much pressure the tester would put on the vein.
In other words, he knows nothing or he lied.
I don't mind that the ms society disagrees with this approach but at least the physicians could get their facts straight.
the free food wasn't bad.
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Postby frijkaard » Wed May 05, 2010 9:02 pm

Incredible!.......and this thing is the Director in Portland? This society is supposed to be an advocate for us. Instead, they are too influenced by the political and big pharma.Facts seem to dictate that CCSVI has profoundly improved the lives of many people who have undergone the procedure. Yet all this gorilla can do is dole out a pack of lies! If he doesn't know pro's and cons from tests, he should simply say so and shut his yap. To be lazy and simply slander Zamboni and his theory is sad. We have MS and with time, we get worse. There is in urgency that needs to be addressed with an openness. This ape is not helping us get relief or go forward. I'm disappointed in his response also because as our advocate, it should be his business to know. Unfortunately, I've heard this story or similar variations, from all across the county. So...... do I think they are preoccupied by other interests besides MS? Yes. Are they shills for big pharma? Maybe. Do I think they are doing their best to find a cure for this disease? No. Would I give them my money through donation or fundraiser? No.
Question: Does anyone know if there are members on the MS society board or higher ups who actually have MS?
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Re: ms society dinner

Postby Salvatore24 » Wed May 05, 2010 9:58 pm

reneelucia wrote:Aside from making fun of Zamboni's name he said that "Zamboni claimed to cure everyone, including his wife with ms" He said the study at the university of buffalo was rigged because the results depended on how much pressure the tester would put on the vein.


Pardon my language, but what a fucking idiot. What an ignorant and ill-informed comment to make. If Dr. Zidanov is exploring this theory, why would he say that the study is rigged? Does he think Zidanov or the staff aren't properly trained or qualified? That just pisses me off to no end.
Last edited by Salvatore24 on Thu May 06, 2010 1:20 am, edited 1 time in total.
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Postby Trish317 » Wed May 05, 2010 10:07 pm

Good thing I wasn't there. I would have jumped up and interrupted him. He doesn't deserve to have M.D. after his name.
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Postby Johnson » Thu May 06, 2010 12:30 am

Trish317 wrote:Good thing I wasn't there. I would have jumped up and interrupted him. He doesn't deserve to have M.D. after his name.

I might have jumped up and occluded his jugulars for him.

Perhaps when fish is served at the next dinner, and he chokes on a bone, we must do a double-blinded study to see what the best course of action might be. A "sea bass" bone might need a different action than an orange ruffy bone, or a sole bone. How would one know that it is a fish bone that he is choking on, and not a truffle, or a piece of scalloped potato? Is he even choking? It might be an anaphylactic reaction to a peanut, or a shrimp - in which case Rebif might be the best course of action...
My name is not really Johnson. MSed up since 1993
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Re: ms society dinner

Postby sbr487 » Thu May 06, 2010 12:40 am

reneelucia wrote:Wow...went to my first ms society dinner to listen to Dr. Cohan, the director of the ms center in portland talk. It was pretty basic stuff until someone asked hime about ccsvi. Aside from making fun of Zamboni's name he said that "Zamboni claimed to cure everyone, including his wife with ms" He said the study at the university of buffalo was rigged because the results depended on how much pressure the tester would put on the vein.
In other words, he knows nothing or he lied.
I don't mind that the ms society disagrees with this approach but at least the physicians could get their facts straight.
the free food wasn't bad.


For too long, Dr. Zamboni has been target of personal attacks ... pardon if people dont like this, but its my feeling that these people dont think that anything credible can happen outside western America ...
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Postby BalsaBoy » Thu May 06, 2010 6:34 am

That's a cracker, Johnson. Maybe we should try various fishbones in mice first.
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Postby Motiak » Thu May 06, 2010 6:39 am

Zivadinov must be terrible at rigging stuff considering his positive %s were way lower than Zamboni's and Simka's.
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Postby TFau » Thu May 06, 2010 9:34 am

Johnson wrote:
Trish317 wrote:Good thing I wasn't there. I would have jumped up and interrupted him. He doesn't deserve to have M.D. after his name.

I might have jumped up and occluded his jugulars for him.

Perhaps when fish is served at the next dinner, and he chokes on a bone, we must do a double-blinded study to see what the best course of action might be. A "sea bass" bone might need a different action than an orange ruffy bone, or a sole bone. How would one know that it is a fish bone that he is choking on, and not a truffle, or a piece of scalloped potato? Is he even choking? It might be an anaphylactic reaction to a peanut, or a shrimp - in which case Rebif might be the best course of action...


You are too funny Johnson - I loved the poignant analogy and laughed out loud!

I would think that the University of Buffalo, or Dr. Zivadinov's lab, would have a legal cause of action for those publicly made comments. Assuming they are not true (I don't see how they could be true), attempting to defame Dr. Zivadinov's research ethics could affect his success in being awarded further funding (although I would think that most people could see through those remarks). Cohan should be forced to issue an apology.
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Postby Chrystal » Thu May 06, 2010 9:50 am

Johnson, thank you for the huge laughs while reading your post!!!!!!

SBR487, you're right - realizing that most of these naysayers suffer from a superiority complex...and cannot believe that anyone outside of North America could have found an answer to MS.
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Postby cheerleader » Thu May 06, 2010 10:09 am

What's really funny is how Italians respond to North Americans making fun of the name "zamboni." They think we're morons...

Via Zamboni is the name of the street which is the main drag thru Europe's oldest university- the University of Bologna. Zamboni, to the Italians, connotes academia, intelligence and a quest for knowledge.

The University of Bologna was probably the first University in the western world. Its history is one of great thinkers in science and the humanities, making it an indispensable point of reference in the panorama of European culture.

The institution that we today call the University began to take shape in Bologna at the end of the eleventh century, when masters of Grammar, Rhetoric and Logic began to devote themselves to the law. In the nineteenth century a committee of historians, led by Giosuè Carducci, attributed the birth of the University to the year 1088.

http://www.eng.unibo.it/PortaleEn/Unive ... efault.htm

love the bone choking image....
How would this guy explain my husband's MRV....no pressure on any veins there...just 2 blocked jugulars.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby zinamaria » Thu May 06, 2010 10:24 am

You nailed that one Johnson oh so beautifully...


z
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Same thing

Postby BELOU » Thu May 06, 2010 10:27 am

That's funny, when I called
L'Institut de réadaptation en déficience physique de Québec (IRDPQ) to renew my Copaxone (december 09), I ask the nurse, I've you heard about CCSVI? You know what was the answer?

[b]''Zombini (laugh after), Neuro says more research needs to be done'' /b]

After, I was so upset and dared not to ask to my neuro about it.

This kind of reaction is not professional and after that I tried to find infos by myself not relying anymore in those guys.
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Postby zinamaria » Thu May 06, 2010 10:30 am

Oh yeah, and what the naysayers tend to forget (selective memory anyone?) is that Zamboni's right hand man is...gee....a NEUROLOGIST! A brilliant one at that who gives a damn about his patients, but equally important is dedicated to ending suffering...something some have forgotten in their small time 'joking' over someone's name. How infantile, how pathetic.

z
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Postby ozarkcanoer » Thu May 06, 2010 11:48 am

Why in the world would BNAC "rig" the doppler testing ? It would be professional suicide !! What an asinine remark to make. Other sites than Buffalo are testing CCSVI (e.g. Georgetown) and will help support or refute the BNAC studies. Maybe we should ask this neuro if Teva "rigged" the testing on Copaxone to sell more product.

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