80% for CDMS - It's Real

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

Postby Sotiris » Sat Feb 20, 2010 1:02 pm

Squeakycat wrote:@ Sotiris

This breakdown works, but does perhaps unrealistically assume all 50 people with CIS in the study are included in the first 500.
You are right. I made that assumption because it is the only possibility to have 38.0%. But since the 38% was only given by a reporter it can be that the meaning was around 38% and not "38.0%". I also thought that it is not completely unrealistic to have all 50 CIS in the first 500 because when one first learns about the possibility of having MS, one is usually more interested about MS research and more eager to participate in such a study. And I should also add that 0 pwOND with CCSVI is another arbitrary assumption I made.
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Postby Billmeik » Sun Feb 21, 2010 8:30 am

having slept on it I withdraw my guess. My understanding is worse than I thought.
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Postby Billmeik » Sun Feb 21, 2010 9:11 am

really I havent been paying enough attention. Are we sure that the 56% comes from the 280 ms patients or could it be 280 plus 50?
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Postby Billmeik » Sun Feb 21, 2010 12:47 pm

so I had thought about it like 56% first. Gets bigger when you take out the borderlines 62%. Gets bigger when you take out the cis 80%. and that seemed right.


But the cis were already out? If that is the case it means one thing, but if they were in I cant get the numbers to work either. Clearly somewhere some numbers are wrong, and I'm beginning to agree the 38 and 80 given to the reporter are a good place to start. So this thread should be renamed '80% may not be real'.
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Postby pegmegrund » Sun Feb 21, 2010 1:19 pm

Billmeik wrote: Are we sure that the 56% comes from the 280 ms patients or could it be 280 plus 50?

I don't think we are sure... at least I'm not.

I emailed Dr. Ziv the other day asking if he could clarify the numbers - who are the mystery 59? Was the CIS group included? He nicely responded that he is unable to answer any questions outside of official interviews and press releases. I figured that was the case, but I tried... So, I'm done crunching numbers and back to writing letters and making YouTube videos!
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Postby Sotiris » Sun Feb 21, 2010 1:26 pm

Billmeik wrote:[...]So this thread should be renamed '80% may not be real'.
I think it is simply the percentage they found in patients with more advanced symptoms. BTW, acc. to the Buffalo press release
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.
This may mean that CCSVI is a reason of the progression but it could also mean that when CCSVI is bad it is easier to be found with the doppler. Either way CCSVI is very important.
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80% real

Postby aliyalex » Mon Feb 22, 2010 7:27 am

doesn't ashton's breakdown clarify ?

http://www.direct-ms.org/magazines/Embr ... 2%2010.pdf
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Postby Billmeik » Sat Mar 06, 2010 9:36 am

retracted
Last edited by Billmeik on Sat Mar 06, 2010 11:06 am, edited 1 time in total.
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Postby cheerleader » Sat Mar 06, 2010 9:43 am

Guys...please don't print confidential e-mails from doctors, they really hate that, and will stop talking to patients. Honestly.

Let's let them be.

Our job is to find out if we or our loved ones have CCSVI. If you have it, it's 100% a part of your life. Other numbers do not matter.

Let the researchers/doctors do their job-
respectfully,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Billmeik » Sat Mar 06, 2010 10:39 am

ya regreted that
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Postby cheerleader » Sat Mar 06, 2010 10:42 am

Billmeik wrote:ya regreted that


psst...Bill, you can edit that post, and just rephrase what Dr. Z said to you...without posting his e-mail.
:wink:
I made the same boo boo,
cheer
Husband dx RRMS 3/07
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http://ccsviinms.blogspot.com
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Postby Billmeik » Sun May 09, 2010 2:33 pm

This is no longer secret I hope. The email i got back from ziv said:

Not exactly, unfortunately, I can not share these data with you before AAN meeting, as this may jeopardize the late breaking news abstract submission.

I hope you understand.

RZ

-------Original Message-------

From: Bill Meikle
Date: 3/5/2010 4:51:11 PM
To: Robert Zivadinov
Subject: Re: cdms and cis numbers...

so 38% cis and 80% cdms.



On 2010-02-15, at 10:37 AM, Robert Zivadinov wrote:

Yes.

-------Original Message-------

From: Bill Meikle
Date: 2/14/2010 10:53:10 AM
To: rzivadinov@bnac.net
Subject: cdms and cis numbers...

Hi Dr.Zivadinov

So the CBC reporter compared the rates for CIS subjects to "those with more advanced symptoms of the disease".

would that be CIS vs CDMS?

Thanks.
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