This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

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.

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".

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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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

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.

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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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

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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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

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.

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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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

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.

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!

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

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.

Politics.

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