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

ccsvi

Postby zinamaria » Mon Jan 24, 2011 9:22 pm

Thankyou Cheer.

Blossom, I heartily agree.

Lyon wrote:

"A rose is still a rose regardless of whether or not someone finds it less complicated to try to convince others that they are "treating CCSVI" rather than MS. "

Interesting that you would choose to use the words of Gertrude Stein, who was, in fact, trying to articulate the essence of a 'rose' by using repetition and thereby believing she was getting closer to a 'rose' (in language anyway).
But the question remains, are we any closer to what is the mystery of a 'rose' because of the repetition of the word?

I do not think this is a matter of less complicated or not by using 'treating CCSVI, rather than MS', unless you think the doctors, researchers, and scientists are playing games. What is there about making connections that is so threatening?
Frankly, it could not get any more complicated as the study of CCSVI continues, as complicated as, I guess, our venous systems are, about as complicated as MS is and has been, especially to diagnose. It took two years and the elimination of everything else for them to say 'MS'. But I still have to ask myself, what is MS exactly?

My point? I just think it is important to keep an open mind as regards the possibility of words being used like 'there is a possible link to' or, 'there is a correlation to', which is what 'they' are all saying....and this is precisely why CCSVI is not MS...because there is no = sign mentioned anywhere as far as I can tell, as far as I have read from Zamboni et al.

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Re: ccsvi

Postby concerned » Mon Jan 24, 2011 9:25 pm

zinamaria wrote:
"A rose is still a rose regardless of whether or not someone finds it less complicated to try to convince others that they are "treating CCSVI" rather than MS. "

Interesting that you would choose to use the words of Gertrude Stein, who was, in fact, trying to articulate the essence of a 'rose' by using repetition and thereby believing she was getting closer to a 'rose' (in language anyway).


Ummm................... Shakespeare.

Also I think it's getting closer to the Taoist saying "The Tao that can be spoken is not the true Tao" or Alfred Korzybski's Map/Territory relation (the map is not the territory it represents) than what you said.


Oh Romeo....
Last edited by concerned on Mon Jan 24, 2011 9:29 pm, edited 1 time in total.
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Postby Cece » Mon Jan 24, 2011 9:28 pm

wikipedia wrote:The sentence "Rose is a rose is a rose is a rose." was written by Gertrude Stein as part of the 1913 poem Sacred Emily, which appeared in the 1922 book Geography and Plays.
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Postby concerned » Mon Jan 24, 2011 9:31 pm

I don't think that's what Lyon was paraphrasing, I could be wrong.
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Postby Cece » Mon Jan 24, 2011 9:32 pm

I'm just backing up zinamaria....

scorpion wrote:It looks like the myth of a "miraculous cure" is being perpetuated through the internet and it is a shame because if there is anything positive about being treated for CCSVI how in the world will we ever know????

Through registries and randomized controlled trials. But it takes time. I've heard 5 - 10 years tossed around as the figure, I hope we can backdate that as starting a year ago.
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Postby concerned » Mon Jan 24, 2011 9:37 pm

Well the Stein paraphrase is just a reference to Shakespeare anyway so at least he would still be making a meta-reference to Shakespeare, if he was paraphrasing Gertrude Stein, which, when his comments are taken in context, I'm pretty sure he wasn't.

I'm pretty sure he was saying, whatever you want to call this "breakthrough MS treatment", it's still an MS treatment, and should be judged as such.
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Postby CenterOfGravity » Mon Jan 24, 2011 9:48 pm

cheer, thanks so much for that video. As a Stanford grad with multiple degrees, I'm rather proud to see the type of doctor and a Stanford guy representing CCSVI. Even though it should go without mentioning, Stanford's medical school and medical center is a rather pre-eminent place, and they don't usually have "charlatans" on staff there. I don't see how anybody could watch that video and not at least think "well, maybe they are on to something, and I look forward to the science to see how it plays out", instead of needing to be a contrarian.


Similarly, I do think extremes of any type are bad bad, whether in politics, religion, whatever. This "Colin Rose" character seems more a charlatan to me than anyone, it seems obvious he is blowing smoke for some radical reason, one that doesn't at all seem to be rooted in anything but vitriolic emotions. But I also do think people going around espousing that CCSVI is THE answer and the end-all-be-all to MS are also dangerous, because they help to set unrealistic expectations. From what I see, the reality of what these doctors like Dake, Sclafani, Zamboni, Siskin, etc, are finding is amazing enough!! It doesn't need to be turned into a magical complete solution and answer. The science will prove there is something there, I truly believe that, but even with my strong beliefs about it, I also believe the science is absolutely necessary.
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ccsvi

Postby zinamaria » Mon Jan 24, 2011 10:18 pm

Shakespeare: A rose by any other name would smell as sweet'...

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Postby cheerleader » Mon Jan 24, 2011 10:31 pm

CenterOfGravity wrote:cheer, thanks so much for that video. As a Stanford grad with multiple degrees, I'm rather proud to see the type of doctor and a Stanford guy representing CCSVI. Even though it should go without mentioning, Stanford's medical school and medical center is a rather pre-eminent place, and they don't usually have "charlatans" on staff there. I don't see how anybody could watch that video and not at least think "well, maybe they are on to something, and I look forward to the science to see how it plays out", instead of needing to be a contrarian.


glad you liked the video, COG. Stanford's a special place. You were fortunate to go there! It was actually Dr. Cooke (another Stanford professor/endothelial researcher) that read the Zamboni research and gave it to Dr. Dake for me. Dr. Dake and Dr. Cooke have published hundreds of papers, and are respected scientists and researchers, certainly not extremists. And they would agree, the science is necessary. I hope more people listen to Dr. Dake for themselves. It takes 15 minutes. Much more illuminating than arguing about roses of any shape or smell....
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Tue Jan 25, 2011 3:31 am

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Should neuros advise on veins ?

Postby MarkW » Tue Jan 25, 2011 4:36 am

As usual the naysayer Lyon seeks to mislead pwMS by opening a thread with totally the wrong question.
Interventionlists should diagnose and treat CCSVI syndrome. If you have MS then have your veins checked and treated (if required) by a vascular specialist. Your neuro's opinion is irrelevant.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Should neuros advise on veins ?

Postby concerned » Tue Jan 25, 2011 9:02 am

MarkW wrote:As usual the naysayer Lyon seeks to mislead pwMS by opening a thread with totally the wrong question.
Interventionlists should diagnose and treat CCSVI syndrome. If you have MS then have your veins checked and treated (if required) by a vascular specialist. Your neuro's opinion is irrelevant.

MarkW


I think this is a very important issue that Lyon brings up.
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Good work Cheer

Postby Gordon » Tue Jan 25, 2011 9:44 am

Good work Cheer !!
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Re: Should interventionalists treat MS?

Postby frodo » Tue Jan 25, 2011 10:49 am

Lyon wrote:http://www.theheart.org/article/1175909.do

It's a high-profile [procedure] that's getting a lot of press, and if we crap the bed on this, it's going to affect interventional and endovascular medicine in a big way."


The question is, should neurologists treat vascular problems?
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Postby Lyon » Tue Jan 25, 2011 11:29 am

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