Only 55% for buffalo study?

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

Postby L » Wed Feb 10, 2010 12:37 pm

Jugular wrote:Sorry but I think these results will blow the lid off MS research.


I don't think that they will. I think that neurologists will be much more inclined to think of this as an indicator of a predisposition to MS as opposed to a causative factor of our illness. You are quite right regarding the iron deposit data. What will cause a stir is if iron deposits in our brains are shown to correspond with various venous abnormalities. That will be as striking as a 100% correlation, MS incidence with evidence of CCSVI.

55% of MS patients and 22% of healthy controls.. It's not as striking a differernce as the newsletter last week led me to believe it would be. The wording of that newsletter led me to believe that the most exciting MS research in 200 years was about to be unveiled.
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Postby L » Wed Feb 10, 2010 12:41 pm

thornyrose76 wrote:I don't know 55/62% compared to 25% not a bad percentage? Remain, cautiously optimistic as well...


Remember that the 62% includes borderline cases which would have occurred in the controls too, so it would be 55/62% and 25/something-like-32%

I wouldn't be at all surprised if borderline cases were discounted because proportionally more of them occurred in the control group than the MS population..
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Postby thisisalex » Wed Feb 10, 2010 1:04 pm

i think i have an explanation for the 55%... its very simple. Zamboni worked backwards. First he had the 65 patients, but no criterias. He examined all of them, and he defined the 5 criterias. OF COURSE he had 100%. Because he has defined the rules for the game :) But these rules are only valid for those 65 italian MS patients!!!

Lets play with the situation... Imagine, on the first day he examined his first 10 patients. He found 2 criterias (2 different type of narrowing), which was true for all his 10 patients. He thought its enough.

Now imagine the next day as a control study. (like the buffalo study was) Another 10 patients arriving for an examination and Zamboni with his existing 2 criterias finds only 4 of the 10 patient having narrowing. (which is 40%) Does that mean, he was wrong on the first day? No. it just means he has to define more criterias to find all of the narrowings.
(and dont forget: same patient genes(italian), same patient diet (pasta), same doctor (Zamboni), same ultrasound tool, same protocol!)

And here comes the problem: in Buffalo there are brand new patients involved, with brand new genetics, more sunshine, another diet...another researchers, another equipments, etc.

Buffalo was only the 3rd day.

We need more criterias.

Guys, this is a wonderful result, i am amazed how could they reach the 55%...

alex
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Postby ozarkcanoer » Wed Feb 10, 2010 1:08 pm

thisisalex,

You are doing some good thinking !!!!

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Postby Cece » Wed Feb 10, 2010 1:09 pm

L wrote:
thornyrose76 wrote:I don't know 55/62% compared to 25% not a bad percentage? Remain, cautiously optimistic as well...


Remember that the 62% includes borderline cases which would have occurred in the controls too, so it would be 55/62% and 25/something-like-32%

I wouldn't be at all surprised if borderline cases were discounted because proportionally more of them occurred in the control group than the MS population..


From the article, it's 56%/22% with the borderlines counted as normals; 62%/26% with them excluded altogether.
Last edited by Cece on Wed Feb 10, 2010 1:12 pm, edited 1 time in total.
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Postby EnjoyingTheRide » Wed Feb 10, 2010 1:12 pm

L wrote:
It's not as striking a differernce as the newsletter last week led me to believe it would be. The wording of that newsletter led me to believe that the most exciting MS research in 200 years was about to be unveiled.


I agree. BNAC may be outstanding doctors and scientists, but they should hire a media relations firm to keep themselves from overpromising. Their results were in line with what I've been expecting all along, until I adjusted my expectations upward last week.

Once the dust settles, this will continue to proceed until we have a firm understanding of the relationship between CCSVI, iron deposits, and MS. But it will be slow and steady progress, not an overnight wonder, and certainly not a miricle.
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Postby Johnnymac » Wed Feb 10, 2010 1:26 pm

I think is not necessarily bad news, it just re-enforces the fact that there are still a lot of unknowns.

It'll be interesting to see the full results of the study to see the percentages in various sub-groups within the study....like how prevalent CCSVI is in regards to level of MS progression. It's not unthinkable that someone with a less severe level of MS may not have any detectable narrowing or malformity (using current technology and technique), but that as the disease moves forward CCSVI becomes more apparent.

As long as the study results continue to push forward the CCSVI research, diagnosis and treatment...along with a new open-mindedness from the medical community into the pathology of MS then it's a definite win! There are a lot of really smart people working on this and I bet the diagnostics and procedures, along with additional treatments will move forward at a pretty quick pace.

I'm as excited about this as I was from the beginning. 55% in this press release doesn't waiver my belief that this is a MAJOR discovery that is the beginning of the end of MS as we know it.
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Postby Jugular » Wed Feb 10, 2010 1:51 pm

EnjoyingTheRide wrote:
Once the dust settles, this will continue to proceed until we have a firm understanding of the relationship between CCSVI, iron deposits, and MS. But it will be slow and steady progress, not an overnight wonder, and certainly not a miricle.


Miracle = I was blind and now I can see. What do you call MS research scientists waking up to the realization that they've been heading in the wrong direction for the last 40 years? An awakening perhaps? A revolution? This is exciting and new and has spillover potential. I predict the research will be fast and furious. Modern science can move with remarkable speed now that it's hot on the trail of a breakthrough.
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Postby thornyrose76 » Wed Feb 10, 2010 1:52 pm

I totally agree with you, well said! I think we've ultimately turned a corner here.
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Postby HappyPoet » Wed Feb 10, 2010 2:18 pm

1. Dr. Dake! Calling Dr. Dake! Does anyone have any idea what his percentages are? When will his paper on those early pioneers finally be published?

2. What about the very small study (16 patients) conducted by Zamboni and BNAC together that showed 100% of MS patients have CCSVI and 0 controls have it? Eight American patients flew to Italy for Dr. Zamboni's testing and eight Italian patients flew to Buffalo for BNAC's testing -- doesn't this mean BNAC's testing is quite similar to Dr. Zamboni's?

3. Peer reviewers always seem to ask/demand that any type of outliers be excluded, and perhaps with all the hype, they were especially conservative. I hope that makes sense!

4. If the BNAC study is to replicate Zamboni's study, why didn't they follow the same study design?

5. If, as some on this thread have proposed, CCSVI gets worse as the patient gets worse, doesn't that mean that MS causes CCSVI than the other way around?

FWIW, I had my testing yesterday, and I have an untreatable intracranial venous malformation and missing jugular. AND, I have CDMS of the RRMS variety.

~HappyPoet
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[Edited for clarity]
Last edited by HappyPoet on Wed Feb 10, 2010 5:31 pm, edited 1 time in total.
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Postby Rokkit » Wed Feb 10, 2010 2:25 pm

http://www.buffalonews.com/258/story/951949.html

The Buffalo study reflects similar findings in MS patients in Italy, although to a lesser degree, a difference that might be explained by the use of different devices to diagnose the blockages, Zivadinov said.
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Postby JoyIsMyStrength » Wed Feb 10, 2010 2:34 pm

FWIW, I had my testing yesterday, and I have an untreatable intracranial venous malformation and missing jugular. AND, I have CDMS of the RRMS variety.


HP I am so sorry... this must be very disappointing for you. Just want you to know we care. Praying that your disease remits and stays that way. For good.

Pam[/quote]
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Postby thisisalex » Wed Feb 10, 2010 2:34 pm

Reached by phone in the U.S where he is attending scientific meetings, Zamboni said he is heartened by Zivadinov's team's findings.

"This confirms there is a highly significant difference between MS patients and controls and that it [CCSVI] is a major risk of [MS] development," he told CTV News.


http://toronto.ctv.ca/servlet/an/local/ ... ntoNewHome
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Postby Direct-MS » Wed Feb 10, 2010 2:40 pm

The Buffalo data are most important and clarify a few things. First of all with 20-25% of healthy people having CCSVI, and only 55-60% of persons with MS having CCSVI, CCSVI is clearly not the primary cause of MS.
It would appear the most reasonable model is MS is primarily an autoimmune disease as the genetic and a lot of other data have indicated and that having CCSVI is a major risk factor for MS. Thus if you are susceptible to CNS autoimmunity and have CCSVI your chance of contracting clinical MS is much higher than the person who is only genetically susceptible to CNS autoimmunity. Conversely if you have CCSVI (i.e. part of the 20-25 % of the population that does) and are not susceptible to CNS autoimmunity you will not get MS.
The data also suggest that CCSVI will affect the clinical course of MS and thus should be addressed. Unfortunately it will take time to prove this even though it is rather obvious. For example smoking is a risk factor for MS and thus it is wise not to smoke. Similarily CCSVI is a risk factor for MS and thus if you have CCSVI and MS it would be wise to get it repaired.
I realize this is not what many people on this forum want to hear but it is critical to be as objective as possible and accept what the science says. It is important to get CCSVI relieved but it is perhaps more important to address the autoimmune nature of MS. Trying to rationalize the Buffalo data to hold on to the concept that CCSVI is the primary cause of MS is not productive.
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Postby fogdweller » Wed Feb 10, 2010 2:47 pm

thisisalex wrote:

i think i have an explanation for the 55%... its very simple. Zamboni worked backwards. First he had the 65 patients, but no criterias. He examined all of them, and he defined the 5 criterias. OF COURSE he had 100%. Because he has defined the rules for the game But these rules are only valid for those 65 italian MS patients!!!

Buffalo was only the 3rd day.

We need more criterias.

Guys, this is a wonderful result, i am amazed how could they reach the 55%...


thisisalex, you are absolutely right. Anything close to 100% would have been rather suspicious. I had been very skeptical of the 100% number, but your explaination is very helpful to me.

There were two things being tested in Buffalo ... 1. Did MSers have a vascular drainage problem in the head and neck, and 2, if so was Dr. Zamboni's cefinition for the criteria correct and sufficient.

The first question got an overwhealming YES. The second question got a qualified yes. Dr. Zamboni's defined criteria was helpful but not entirely sufficient.

The earthshattering, paradeigm shift here is that MS researcy will shift from achingly slow autoimmune research at the cellular and sub-cellular level using a very poor animal model, to new and hopefull very rapid research at the relatively macro level, with some treatment already available and more and better treatment to come.
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