ccsvi how it could be wrong

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

Postby Zeureka » Fri Jan 15, 2010 3:02 pm

Cece wrote:I've looked for ways for this to be wrong, because of the whole too-good-to-be-true thing. Once the replication at Buffalo turned up, even in the small-scale, it starts to be that there would have be gross incompetence or fraud for it not to be the case that there are venous abnormalities in the majority of MSers. And from there, the rest follows.

Sorry for the long post. I am still in some shock/denial that CCSVI is real and so I go through the evidence on a fairly regular basis. It keeps coming back to a big fat yes.

Same for me! Was also very sceptical in the beginning...and will only know next Tuesday if I belong to the claimed 95% of CCSVI cases (have doppler exam in Poland).

What worries me a bit is that the Buffalo scientists were (are maybe still?) consultants/lecturers for Serono/Merck, Biogen and Novartis. As regards to fraud, hope the methodology applied in the studies is not biased. But on the other hand: which top scientist would not have such a pharma-history?

Can anyone tell me what the first published Buffalo results communicate? Is the tone positive? Or neutral?

Thanks

Steffi
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Postby ozarkcanoer » Fri Jan 15, 2010 3:06 pm

The pilot study in Buffalo involved patients and controls from Italy and the USA. The CTV W5 documentary talks about this pilot study. The documentary should be watched over and over again.

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Postby Zeureka » Fri Jan 15, 2010 3:19 pm

Billmeik wrote:there is already a little paper I saw where something like 35 patients were looked at with 100% ms/ccsvi link. At buffalo.


I would be highly interested in a web-link to that first Buffalo outcome :D ! Would you manage to dig it out?

Thanks a lot!

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Postby Billmeik » Fri Jan 15, 2010 3:29 pm

that first buffalo paper is in the papers section of this thread I think. If not it should be by now...
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Postby elaine » Fri Jan 15, 2010 3:31 pm

I believe in ccsvi so much so that i am already designing my tattoo for when i do one day get it done ..Liberated 201?
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Postby Billmeik » Fri Jan 15, 2010 3:49 pm

a real problem is that the diagnosis of ccsvi seems to have some subjective elements. Some days I see a future where this will be like heart disease and veins and arteries will be quantified... I think it will be a while before that and all the tricks of post cranial blood flow are understood...still if the definitions arent rigid you can say anything, does ccsvi have a rigid definition that everyone agrees to?

I mean the emperor's tailors really could see that suit and everyone agreed! It took a child to say that the emperor wears no cloths...

group delusion?
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Postby sou » Fri Jan 15, 2010 4:03 pm

Hi!

Be it bad or good news, we can't but accept the facts. Our dearest Dr Zamboni has just associated MS to a different condition called CCSVI and proved that it is safe for a pwMS to correct it and it MIGHT lead to favourable neurologic outcome.

Is tooth decay proven to be safely fixed in pwMS? On the contrary, there used to be some buzz about mercury fillings.

And of course, let us not forget that a pessimist is an experienced optimist. So far, experience in MS has been very bad. But this does not guarantee that it will always be that way.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Zeureka » Fri Jan 15, 2010 4:06 pm

Billmeik wrote:that first buffalo paper is in the papers section of this thread I think. If not it should be by now...

You mean the "CCSVI RESEARCH here" sticky? Or which papers section? Sorry, am new on here and can't find it in the RESEARCH sticky one...if you know the link maybe good idea to post it there as well?
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Postby ozarkcanoer » Fri Jan 15, 2010 4:22 pm

Please read cheerleader's notes from the September 8, 2009 cenaculum in Bologna :

http://www.keepandshare.com/doc/view.php?id=1370985&da=y

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Postby Billmeik » Fri Jan 15, 2010 4:24 pm

hmm this paper has 16 people

h http://www.fondazionehilarescere.org/pdf/HILARESCERE-abstract-Weinstock.pdf


someone needs to add it to the research thread.
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Postby Billmeik » Fri Jan 15, 2010 4:28 pm

e has found 100% venous obstruction in every MS patient tested, now 35. There are a variety of patterns:
IJVs 87.3%, (very high jugulars 52.7%- only available for stenting)
azygos 5.5%
dural sinus 3.6%
He is finding that EDSS score correlates with the number of veins treated. The more stenosis, the more progressed the MS is.

where did I find this info I posted in another thread?
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Postby Billmeik » Fri Jan 15, 2010 4:31 pm

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Postby cheerleader » Fri Jan 15, 2010 4:47 pm

Let's try to clear some stuff up.
Billmeik, those are my notes from the Bologna conference linked above...I just transcribed what the doctors said, and typed it up. That does not qualify as published research...they are just an observer's notes.

Marie has linked all of Dr. Zamboni's research papers, along with other corroborating research in the Research Sticky towards the top of the CCSVI thread. The 100% of MS patients tested with CCSVI is from the Zamboni CCSVI paper of Dec. '08. The endovascular treatment (Liberation procedure) paper was just published last month. These are two different studies. One was to find the level of concordance in CCSVI in pwMS, the other was to see how pwMS and CCSVI did after having venous balloon procedures. Marie has all of the research on the sticky...we've been pretty thorough around here for awhile now.

Buffalo HAS NOT released any numbers yet. They had promised some for November and decided to wait. We are expecting the first part of their study to be released next month.

The joint Buffalo/Italy study is the endovascular treatment study mentioned above, which was published last month...it included 16 patients, 8 from Italy and 8 from the US.

Supposition is fine, but we really need to stick to facts.
What Dr. Zamboni has discovered is real and scientific. There is a correlation to venous stenosis and congestion in MS patients. What we cannot do is call this a "cure" or the end of MS. What Dr. Zamboni is showing is correlation. When veins remain open, MS appears to remain in remission. The complete mechanism behind this is being researched- as is the way to deal with CCSVI.

The reason it is important to discuss historical facts like "Putnam's dogs" is because we can learn from history. MS patients pushed Dr. Putnam for THE CURE! and he was unable to keep his research going...he tried addressing the venous issues he discovered with blood thinners, and it did not work. MS patients were discouraged and medicine moved on to the EAE theory. Perhaps if Putnam had not been rushed or pushed for a cure, he may have continued on in his venous studies. We cannot allow Dr. Zamboni's discovery to suffer the same fate- or to be swept aside as quackery. It doesn't matter what we think...it matters what the research says. I really wish we could get back to discussing that-

stepping off of soapbox-
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Zeureka » Fri Jan 15, 2010 5:29 pm

OK, I think even if small number of subjects, the Mini-Zamboni-Buffalo study is indeed interesting scientifically as addition to already other existing science: no soap box :wink: ...

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Postby cathyb » Fri Jan 15, 2010 6:04 pm

Thank you, Cheer. I appreciate your cheerleading, I surely do. We can't let this die, and we won't let it, but we need to keep stoking the fire, I think. I went to speak to a group of MS people the other day, and so few had even heard about this, it was disheartening. I think by rationally discussing things, even if it's over and over again, we can ensure that the message does not get lost. So, once again, I thank you. From the bottom of my heart.
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