Only 55% for buffalo study?

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

Postby mshusband » Wed Feb 10, 2010 3:55 pm

I think what will be more interesting is in the next 500 persons they test. The equipment/protocols are going to be different, more powerful, and hopefully "better".

I bet the percentages go up.

Just a guess ... but as more and more knowledge, skill and aptitude is gained, the results should increase.

I also think one issue I have with blinding the results is this ... if a doctor knows a patient has MS, and knows where their MS lesions are ... they will have better information to start when looking for CCSVI veins and maybe be able to find a little more than just taking a stab in the dark. If that makes sense.
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Postby thisisalex » Wed Feb 10, 2010 3:59 pm

Direct-MS wrote: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.


and why do you think autoimmunity has priority? theres no indication for that. with your logic you could have said: smoking is the primary cause.
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Postby L » Wed Feb 10, 2010 4:05 pm

Cece wrote:
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.


Ah yes, thanks, you're quite right. I think that the disappointment made me skim through the article.
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Postby AlmostClever » Wed Feb 10, 2010 4:11 pm

thisisalex wrote:
Direct-MS wrote: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.


and why do you think autoimmunity has priority? theres no indication for that. with your logic you could have said: smoking is the primary cause.


...and how would this explain an improvement of symptoims for many of those who are liberated?

Is the MS "cured" or the CCSVI? Which one is causing the symptoms?

Why would angioplasty/stenting relieve MS symptoms?
Last edited by AlmostClever on Wed Feb 10, 2010 4:14 pm, edited 1 time in total.
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Postby ozarkcanoer » Wed Feb 10, 2010 4:13 pm

What Direct-MS has to say is important, especially if he is Ashton Embry who was one of the ardent supporters of CCSVI. All of our speculation to try to make CCSVI be the most important factor in MS will not make it so. BNAC's numbers are not strong enough to show causality. I guess we will have to wait and see what the second 500 shows us and also what the other trials happening around the world demonstrate. I know I am in great confusion about the BNAC CCSVI study results and I am having a great deal of trouble trying to process today's news. Maybe CCSVI is just one small piece of the puzzle. I think it is still too early to tell.

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Postby nicko » Wed Feb 10, 2010 5:59 pm

The numbers are lower then I expected but.....

"In this large MS cohort, the presence of CCSVI did suggest an association with disease progression, a finding that was not shown in Zamboni's smaller cohort, Zivadinov notes."

From that statement i'd like to know if they weren't finding CCSVI in those that were very disabled. That statement makes me believe the more disabled the worse the CCSVI is.

CCSVI could be a progressive condidtion in itself. The veins getting worse over time. Maybe being very hard to detect early on.
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Postby ozarkcanoer » Wed Feb 10, 2010 6:06 pm

nicko,

There may be more to this story than the news release today. It is very hard to read a couple of paragraphs of press release and understand almost a whole year of research. What would be nice is an powerpoint presentation from Zivadinov explaining all the details and highlighting the important data and addressing how the study on the next 500 will differ. The problem is that all we have today is some positive spin and a few numbers that only show some correlation and not 100% or 95% or even 90%. Only about 55%.

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Postby prof8 » Wed Feb 10, 2010 6:07 pm

Merlyn wrote:Quite frankly, I think they would get much better results concerning abnormalities if they would simply test iron! Why the hell are they not doing simple blood tests first off??? It's just a blood test, and I bet you they would pick up iron metabolism abnormalities in 100% of the people... all of this rigorous expensive testing and all they need to do is test iron metabolism. I'm disgusted.


You can't confuse measurements of iron in the blood as equivalent with iron in the brain or the vascular stenosis. I am anemic and my iron stores are right on the borderline of being diagnostically below normal. YET....according to Dr. Dake at Stanford and 2 other radiologists I have 90-95% stenosis in my lower jugular veins. So how can I have CCSVI and be extremely anemic with low iron?

We are looking for quick simple answers and I think what the Buffalo study shows us is that MS is not the easiest disease to figure out--perhaps, as Marc suggested, MS is an umbrella diagnosis for an array of neurological diseases that we haven't quite figured out yet.

nicko wrote:
From that statement i'd like to know if they weren't finding CCSVI in those that were very disabled. That statement makes me believe the more disabled the worse the CCSVI is.

CCSVI could be a progressive condidtion in itself.


We may be jumping to conclusions that we can correlate progression with CCSVI. I have mild RRMS -- no real symptoms for past 2.5 years since diagnosis, diagnosed with optic neuritis/headache only, and have multiple lesions and black holes. But I have some almost completely blocked jugular veins. If lesions don't always correspond to disability, then why should CCSVI?
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Postby Cece » Wed Feb 10, 2010 6:33 pm

"MS affects 2.5 million people worldwide, including 500,000 in the United States, and it's prevalence in Buffalo is significantly higher than average." (quoted from the Buffalo press release)

It seems safe to assume that the prevalence of CCSVI is significantly higher in Buffalo as well. So, accepting also that it's possible to have CCSVI and not have MS, it would seem probable that the number of CCSVI cases in the control group also would be "significantly higher" using people from Buffalo than from another part of the country.

L wrote:
Cece wrote:From the article, it's 56%/22% with the borderlines counted as normals; 62%/26% with them excluded altogether.


Ah yes, thanks, you're quite right. I think that the disappointment made me skim through the article.


Not a problem. After your post, I went and double-checked the numbers to try and see what you were seeing!

I wonder about the missing statistic: what are the percentages if the borderlines are counted as having CCSVI?

I wish we had all the raw data to play with.
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Postby Wichita » Wed Feb 10, 2010 7:43 pm

This tidbit was reported in the Canadian Press:

The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.


Maybe the MS patients that Dr. Zamboni tested had more advanced cases, explaining the higher percentages with CCSVI?
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Postby TFau » Wed Feb 10, 2010 7:51 pm

Wichita,

That is quite significant, isn't it? Am I reading that correctly - 55% falls somewhere in between those numbers, depending on just how many CIS and CDMS people there were. Can I ask where you saw that?

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Tidbit

Postby fiddler » Wed Feb 10, 2010 7:54 pm

Hi Wichita, can you send me the link for that quote, please - it sounds quite intriguing. (Oops, I see someone else already asked you).
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Postby TFau » Wed Feb 10, 2010 7:58 pm

Hi Fiddler:

I just found it on the other thread about Media Coverage - it's in the last one:
http://www.google.com/hostednews/canadi ... lWEAgfVkvw

I don't know if I copied and pasted it well enough, but the quote is there.

I'm pretty tired right now, but does this mean that, if one does not include the CIS patients, CCSVI was actually found in 80% of the MS patients. That is definitely worth noting and is closer in line with Dr. Zamboni's findings. And didn't cheer mention in another thread that Dr. Zamboni did not look at CIS patients. I have to double check.
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Postby dlb » Wed Feb 10, 2010 7:59 pm

The following is a short exerpt from the related BNAC article that has piqued my interest:
Of the total participants, 97.2 percent were adults, with the 280 MS patients comprising the largest disease cohort examined in the study to date. The majority of MS subjects were diagnosed with the relapsing-remitting form of MS.

I am curious to know & I suspect they will be focussing on patients with more disease progression in the next 500. There is a reason why they have requested information regarding our clinical diagnosis, EDSS scores, relapse history, etc. It's just my thought that they are assessing much more than we can even begin to guess. The ratio of RRMS, PPMS & SPMS of the 65 patients in Zamboni's study included just slightly more than half having RRMS. It makes sense to me after the statement I copied & pasted above that the next group will involve fewer RRMS patients and there may be some very interesting results for the science minds to assess. I'm personally just happy that this theory is so briskly being put to the test. I also believe some relevant statistics will present themselves once the study is complete.
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Postby TFau » Wed Feb 10, 2010 8:03 pm

I am also intrigued at all the parameters that the Buffalo study is looking at. It would be nice if they looked at more SPMS and PPMS patients at some point.

I double checked, and cheer said that Zamboni did not look at CIS patients - does that mean that the number that we should be comparing to Zamboni's work is actually 80%??? I'm getting excited about this again. I wonder why they didn't quote it like that to begin with - maybe the study wouldn't be statistically significant without the CIS cohort - although I would think that such a variable could only skew the results.

What does everyone else think?
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