80% for CDMS - It's Real

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

Postby Billmeik » Sat Feb 13, 2010 4:56 pm

even if there were people with CIS how would that invalidate the results


ok the cis people don't really have ms, and only 38% of them have ccsvi so including them would be how the results get skewed, not invalidated. Hell this study is the most valid thing we have these days since it was double blinded. But calling it a study of MS patients and then including a bunch of people who only 'might' have ms is kind of not on. Especially when the press release doesn't even mention this.
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Postby cah » Sat Feb 13, 2010 5:02 pm

My personal suggestion would be: The difference between CIS and CDMS is what WE made out of it. Actually it says CIS compared to people with advanced symptoms. That doesn't mean CDMS. Usually, people with more severe symptoms are older. And it's a known fact that when the body ages, every kind of cell is weakened and less flexible. So it's possible that the venous insufficiency starts at birth but nonetheless worsens over time.

But that's just another one of the countless suggestions of a medical layperson. :roll:
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Postby weegie1 » Sat Feb 13, 2010 5:10 pm

Scorpian,
My point is that if the groups are not clearly defined how can any relevance be drawn from the results.
Surely the basis of scientific investigation is that a study group and a control group are clearly identified.
If zivanidov removes "CIS" from the results then that must become a scieintific outcome.
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Postby scorpion » Sat Feb 13, 2010 5:23 pm

But if the CIS was related to MS one would expect to find some sort of blockage,right? From what I understand most people who believe the CCSVI theory say the blockage would cause the "CIS".
Last edited by scorpion on Sat Feb 13, 2010 5:27 pm, edited 2 times in total.
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Postby Cece » Sat Feb 13, 2010 5:24 pm

Lyon wrote: I couldn't agree more. Not to seem condescending but through all this (my being the bad guy) I've been paying attention to CCSVI proponent's EDSS's and disabilities and take it to heart that they often have chosen CCSVI to pin the last of their hopes on and, my words not theirs, that often requires turning a blind eye to science.


The last part here is surprising...I'm not part of any other forum that scrutinizes scientist's press releases and PubMed abstracts whatsoever, much less to the degree that's done here. The group as a whole is actively seeking for the answers in science. The whole theory of CCSVI emerged out of science...it's not something I would have thought up on my own in a thousand years.

I can see where a red flag might go up if someone heads off to Poland on a trip they can't afford...and maybe someone here has done this, I don't know.

I actually think hope is a good thing. CCSVI has raised my hopes...so far I'm managing to live with the pain of hope! My husband does wonder why I'm unsettled by this waiting for answers period...we know our differences, he likes things messy and underway, I like things settled and decided, with closure.
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Postby Billmeik » Sat Feb 13, 2010 5:25 pm

Billmeik, think of varicose veins or CVI. Of course they can progress.


I'm over my head here but when the vascular group classified ccsvi as 'truncular' didn't they put it in a different category than things like vericose veins? So really this is turning into a battle between the vein guys and the brain guys.
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Postby Cece » Sat Feb 13, 2010 5:32 pm

scorpion wrote:But if the CIS was related to MS one would expect to find some sort of blockage,right? From what I understand most people who beleive the CCSVI theory the blockage would cause the "CIS".


Yeah, I would have expected the CIS numbers to be higher given the CCSVI is congenital and the initiating event in the development of m.s. theory.

It shouldn't be ignored that the rate of CCSVI in CISers (38%) is a significant percentage higher than in the control group. I'm still surprised that the control group had any CCSVI blockages at all, let alone 22%.
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Postby Cece » Sat Feb 13, 2010 5:38 pm

Billmeik wrote:I'm over my head here but when the vascular group classified ccsvi as 'truncular' didn't they put it in a different category than things like vericose veins? So really this is turning into a battle between the vein guys and the brain guys.


It's the congenital (from birth) part that you mean, not truncular (of the trunk of the body).

In a different thread...the "how many forms of venous malformations" thread, in which everyone listed what they had and came up with at least 14 distinct weird ways for veins to be...we talked about the list from Dake's presentation for the etiology of venous lesions that he found. Congenital was the first, but there there was inflammatory, arachnoid granulation (big weird marshmallow-like cyst in the neck), bone compressing on the vein, artery compressing on the vein...these latter ones may be from birth or childhood or may arise in adulthood. Congenital CCSVI would seem to be just the one most common type of CCSVI, not the only type.
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Postby mose » Sat Feb 13, 2010 5:53 pm

Cece, he does mean truncular as in what Dr. Lee described at the September conference:

Truncular VM- this is formed as part of the later stage of embryonic development. This form does not have mesencymal cell characteristics. Truncular lesions present as a fetal remnant- such as sciatic veins or superior vena cava malformations


The whole 80 v. 38, or whatever the exact number, had me instantly thinking about CCSVI/MS very much including an extratruncular component, as describe by Dr. Lee:

Extratruncular- this is formed by embryonic tissue remnant which carries a risk of growth, because it is mesynchymal. When stimulated by hormones, pregnancy, etc, it can reactivate and grow.

Stenosis getting worse, and more detectable, via growth due to stimulation of mesynchymal cells.
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Postby Billmeik » Sat Feb 13, 2010 6:01 pm

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines. Now published-

<shortened url>

<shortened url>

This paper can be brought/linked to interventional radiologists and vascular surgeons. CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.
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Postby Cece » Sat Feb 13, 2010 6:07 pm

mose wrote:Stenosis getting worse, and more detectable, via growth due to stimulation of mesynchymal cells.


I think you are on to something here, that makes a ton of sense. (Sorry for being so sure of myself over what truncular meant!! Now I'm embarrassed.)
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Postby mose » Sat Feb 13, 2010 6:26 pm

Cece wrote:
mose wrote:Stenosis getting worse, and more detectable, via growth due to stimulation of mesynchymal cells.


I think you are on to something here, that makes a ton of sense. (Sorry for being so sure of myself over what truncular meant!! Now I'm embarrassed.)


No need whatsoever to be embarrassed. We are all discussing and learning. Being wrong at times is a very important part of the process.

I believe that most of us have no deep understanding of what we've read or how it integrates into the various theories going around. That's why I do find it funny sometimes when we are so very quick to dismiss doctors that say things opposite of what we want to believe. Not saying that they can't be or aren't wrong, but most of us simply do not have the education to be able to see how all the pieces either do or do not fit together.

Me personally, I have but a very rudimentary understanding of what's going on which results in mainly parroting what my brain has chosen to remember.
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Postby AlmostClever » Sat Feb 13, 2010 6:38 pm

Sorry, this thread is past my 3-page attention span so I might have missed this:

Buffalo needed to combine as many studies into this one huge study to keep it cost as well as time efficient. Data can be extracted and analyzed in whatever fashion later on - different groups and subsets can be compared as desired.


I bet Dr. Zivadinov scanned the CIS patients for future reference to see if they go on to develop CDMS - lesions and all.

What clearer proof would there be if someone showed CCSVI and no lesions prior to MS and other CIS ppl who didn't and never developed MS?

It's a long shot but why not do it anyways? You never know... who was it here who had a sibling where this was the case?

DON'T UNDERESTIMATE THE ZIV!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Billmeik » Sat Feb 13, 2010 6:55 pm

the only problem with this thread is why would doctor ziv do such an odd thing? ie: publish numbers that make his study seem small and polite rather than huge and revolutionary.
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Postby AlmostClever » Sat Feb 13, 2010 6:59 pm

Politics.
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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