Multiple Sclerosis Assoc of America - CCSVI article

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

Postby jay123 » Sat Dec 12, 2009 7:01 am

I agree, my donations are now going to the MSAA!
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Postby ozarkcanoer » Sat Dec 12, 2009 8:50 am

Billmeik said :

"In 100% of patients the model was correct.

To say 'they're only at 50% is sort of wrong'. Also they don't mention the small replicating studies at buffalo and stanford that got 100%"

I hate to be a nitpicker since I am as much of a CCSVI as anyone, but how do you know that Buffalo and Stanford got 100% correlation between MS and CCSVI ? There was one person who posted here who reported that she cried all the way home from Stanford because her MRI/MRVs showed nothing wrong.

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Postby CureIous » Sat Dec 12, 2009 10:46 am

ozarkcanoer wrote:Billmeik said :

"In 100% of patients the model was correct.
To say 'they're only at 50% is sort of wrong'. Also they don't mention the small replicating studies at buffalo and stanford that got 100%"
I hate to be a nitpicker since I am as much of a CCSVI as anyone, but how do you know that Buffalo and Stanford got 100% correlation between MS and CCSVI ? There was one person who posted here who reported that she cried all the way home from Stanford because her MRI/MRVs showed nothing wrong.
ozarkcanoer


Yeah I think "100%" should be eliminated from most discussions when it comes to this. Some of the cases (and I believe the one you mention is one of them) present as atypical, and questionable as to a strict "MS" diagnosis in the first place. This is precisely what raises eyebrows in the scientific world at large, especially with a disease as difficult to ACCURATELY diagnose as MS. By the time you get up into the many hundreds and thousands of subjects, there WILL be people in there with clinically definite MS who were mis-diagnosed, and won't have CCSVI. Marc has pointed us towards this astutely and is absolutely correct in that assessment. Now if we have a smaller subset of patients, of course the possibilities of batting 1.000 increase greatly, but small numbers are of no consequence to the scientific world.

Which is why I based my decision on the totality of the evidence involved and not on what some scientist said pro or con.

We need to come up with another, more realistic imaginary number like 94.3%. Fact is people can talk all they want about inside info on studies, but until they are published that's just hearsay on their part and useless for furthering the science of it all.

Mark.

You can almost hear the tiny voice whispering from about halfway down the page http://singularityhub.com/2009/12/02/ca ... sclerosis/
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Sharon » Sat Dec 12, 2009 4:18 pm

Billmeik wrote
In 100% of patients the model was correct.

To say 'they're only at 50% is sort of wrong'. Also they don't mention the small replicating studies at buffalo and stanford that got 100%


I am a little confused - are you referring to Zamboni's 65 MS patients who were treated with the endovascular balloon procedure? You are correct - those 65 patients had a stenosis, but that was one of Zamboni's selection criteria: this is from Burk's article
The 65 participants included 35 individuals with relapsing-remitting MS (RRMS), 20 with secondary-progressive MS (SPMS), and 10 with primary-progressive MS (PPMS). A number of criteria were used to select the patients, including a confirmed diagnosis of MS as well as CCSVI, normal kidney function, and RRMS patients who were taking FDA-approved disease-modifying treatments.

The next statement by Billmeik- "To say they're only at 50% is sort of wrong" Which reference to 50% are you questioning?

Burk did not mention the studies at Stanford because it is all anecdotal information - Dake has not published his report; therefore Burk did not have verified scientific data. The same with the Buffalo studies -- nothing has been published.

I thought these few little things needed to be clarified. :wink:

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ty

Postby kc » Mon Dec 14, 2009 8:37 am

Thank u for posting this. I hope the US can get on board with this procedure.
kc :o
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