80% for CDMS - It's Real

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

Postby TFau » Thu Feb 18, 2010 12:43 pm

marcstck wrote:To my mind, the numbers released by Buffalo are solid, and if an 80% correlation between CDMS and CCSVI was actually found, they'd be shouting it from the rooftops. Buffalo is extremely hard up for funding, and an 80% correlation would have opened up many financial spigots."

That is the question - if they did find that 80% of patients with advanced MS symptoms presented with CCSVI, as was reported by the Canada Press reporter, why was it not in the press release.

"I attended a fundraiser for the Buffalo study about two weeks before the results were announced, and told some of the principles there that I expected a scientifically valid study to show approximately 60% correlation between MS and CCSVI, along with a substantial number of healthy subjects also displaying vascular abnormalities. I based this assumption on what could reasonably be expected when a vascular system that had never before been fully examined was finally looked at, in conjunction with all that we know about MS. The people I made this statement to initially looked surprised, and then assured me that I would be very satisfied when the results were released."

Hmmm, you must be quite satisfied with the reported results then.

"Hope is a great thing, but it should never eclipse reason.


If you are implying that my post above was unreasonable, I am quite offended. I was merely presenting support for another view point. It was because of my hope that I even bothered - it didn't cause me to make up details.

Theresa
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Postby Billmeik » Thu Feb 18, 2010 1:08 pm

so Mark what do you think of the question/reply I got from dr ziv? If I was to chooses a person to believe on rep I'm afraid Id choose him. As to the numbers is it just 5% different?
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Postby weegie1 » Thu Feb 18, 2010 1:23 pm

I asked in an earlier post what "cis" is and LR1234 very kindly pointed me in the direction of "The McDonald Criteria" something I had previously never of.
I did a search on google and came up with this.

http://www.mstrust.org.uk/atoz/mcdonald.jsp

The "McDonald Criteria" states "One attack; objective clinical evidence of one lesion (known as 'clinically isolated syndrome')
Additional data needed for MS diagnosis
Dissemination in space demonstrated by MRI
or
Up to two MRI detected lesions typical of MS plus positive cerebrospinal fluid* AND dissemination in time demonstrated by MRI
or
Dissemination in time demonstrated by MRI (ie new lesion seen on MRI at least 3 months after the original scan)
or
Second clinical attack (relapse)"

So according to this CIS is not indicative of an MS diagnosis.
My problem is not with the numbers or the percentages.
My problem is with the methodology of the Buffalo study.
Why include within either group people/study subjects who are not definetively within one group or the other.
That doesn't make a lot of sense to me.
Please advise!!!!
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Postby Cece » Thu Feb 18, 2010 1:51 pm

TFau wrote:I also note that BNAC listed the following in its criteria for study subjects in the CTEVD study:

- Be an adult or child with confirmed MS
-Adult MS must be supported by fulfillment of the McDonald criteria
- Pediatric MS must be supported by fulfillment of Krupp and International criteria
- Have a disease course of Clinically Isolated Syndrome (CIS), Relapse-Remitting (RR), Secondary-Progressive (SP), or Primary-Progressive (PP) supported by the Lublin criteria


That definitely reads as BNAC considered the umbrella category to be MS and the possible subcategories are CIS, RR, SP or PP.
"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
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Postby weegie1 » Thu Feb 18, 2010 2:30 pm

But why include CIS when itiis not considered a cliniclally diagnosed cateegory of MS?????
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Postby Lyon » Thu Feb 18, 2010 2:46 pm

..
Last edited by Lyon on Tue Jun 21, 2011 5:14 pm, edited 1 time in total.
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That's right...

Postby fiddler » Thu Feb 18, 2010 3:06 pm

For the money spent on a study, you want as many questions answered as possible. They should be able to sort out the kinds of things you want to know (like what is the probability that CDMS patient with such-and-such an EDSS might have CCSVI) with statistical analysis. Unfortunately, we don't have the data or even a clear description of the methodology, so we're mostly just blowing smoke.

It would be nice for me to know the probability of CCSVI occurring in someone in my situation, but by the time that data is out and re-analyzed and the methodologies and conclusions criticized, I expect to be back from Poland.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Billmeik » Thu Feb 18, 2010 3:19 pm

it's 75% if you have 280 patients and you take off 10.2% for borderlines so you have 228. 189 people with ccsvi out of that 228 is 75%. On thinking about it maybe dr ziv could have said 80 rather than 75..it happens.
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Postby TFau » Thu Feb 18, 2010 4:21 pm

Of course, this whole discussion relies on what this one reporter said. Why only her, and why did she say something to the effect that the numbers do not prove that CCSVI is related to progression and Dr. Z agrees...What medical reporter would state a conclusion and then say that the researcher agrees with her?
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Postby marcstck » Thu Feb 18, 2010 4:45 pm

TFau wrote:
marcstck wrote:To my mind, the numbers released by Buffalo are solid, and if an 80% correlation between CDMS and CCSVI was actually found, they'd be shouting it from the rooftops. Buffalo is extremely hard up for funding, and an 80% correlation would have opened up many financial spigots."

That is the question - if they did find that 80% of patients with advanced MS symptoms presented with CCSVI, as was reported by the Canada Press reporter, why was it not in the press release.

"I attended a fundraiser for the Buffalo study about two weeks before the results were announced, and told some of the principles there that I expected a scientifically valid study to show approximately 60% correlation between MS and CCSVI, along with a substantial number of healthy subjects also displaying vascular abnormalities. I based this assumption on what could reasonably be expected when a vascular system that had never before been fully examined was finally looked at, in conjunction with all that we know about MS. The people I made this statement to initially looked surprised, and then assured me that I would be very satisfied when the results were released."

Hmmm, you must be quite satisfied with the reported results then.

"Hope is a great thing, but it should never eclipse reason.


If you are implying that my post above was unreasonable, I am quite offended. I was merely presenting support for another view point. It was because of my hope that I even bothered - it didn't cause me to make up details.

Theresa


Teresa, my post in no way was meant to offend you. I was only trying to clarify things, and if you took offense, I am sincerely sorry.

The 80% number was reported by one reporter in Canada. A statistical analysis of the study breakdown does not support the 80% number. The 280 MS subjects are called clinically definite multiple sclerosis (CDMS), a definition does not include CIS. The press release states clearly that there were three groups of subjects, those with MS, those with CIS and other neurologic diseases, and healthy test subjects. I don't believe there were any misplaced commas, and it seems clear to me that there were 280 CD MS subjects, 161 healthy subjects, and 59 subjects that were CIS and OND.

As for Dr. Ziv's response, I believe he misunderstood the question.

And as for my satisfaction with the results of the trial, I find them extremely encouraging. I've long been a proponent of the CCSVI concept, although I have maintained a healthy skepticism throughout. Other than TIMS, the blog I maintain was one of the first places on the net to cover CCSVI. The results of the Buffalo study have convinced me that CCSVI plays a part in at a substantial subset of MS patients. The results look scientifically valid.

I think it's clear that the 80% number refers to higher EDSS MS patients. If it included all CDMS patients, there would have had to have been an almost equal number of CIS patients recruited, and there are no indications of that whatsoever.

This is all just opinion, of course, and surely not meant to offend anybody.
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Postby TFau » Thu Feb 18, 2010 5:37 pm

Hi Marc:

I may have over-reacted to your post - although it appeared a little condescending near the end on a quick-read-heading-out-the-door. However, I think it is easy to unintentionally sound condescending when one is rationalizing reported results (Scully) versus speculating about what "might be" (Mulder). I'm not sure if this is getting across what I was hoping.

After thinking about it and looking over the email from Dr. Z, I think that I may have given too much sway to the Canada Press report. I hope that it's accurate, but it may fall under the hearsay category. But, if the 80% number is correct, I stand by my previous post as being a rational interpretation.

April is too far away....in the meantime, if my husband is found to have stenosis, we will seek to have it treated.

Thanks,
Theresa
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Postby frodo » Fri Feb 19, 2010 3:56 am

weegie1 wrote:But why include CIS when itiis not considered a cliniclally diagnosed cateegory of MS?????

And besides, no CIS was included in the Zamboni study, which theoretically they wanted to replicate.
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Postby Billmeik » Fri Feb 19, 2010 3:38 pm

thinking back on this thread we have one note from dr ziv that confirms the 80 38 split is between the cis cdms groups and some more speculative and probably wrong statements from Mark, who although he wins full points for ego and certainty has nothing at all to stand on. When I think back the idea of accepting mark's pov because it sounds certain is dumb. that ziv misunderstood the question is absolute speculation as is the notion that if ziv really had 80% he would be shouting it from the hilltops. Although the numbers dont hold up, given the choice of a) assume dr ziv is wrong b) assume the breakdown of the 500 is wrong, I choose b. All in trying to figure this out before the paper comes out in april.
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Postby marcstck » Fri Feb 19, 2010 4:44 pm

Billmeik wrote:thinking back on this thread we have one note from dr ziv that confirms the 80 38 split is between the cis cdms groups and some more speculative and probably wrong statements from Mark, who although he wins full points for ego and certainty has nothing at all to stand on. When I think back the idea of accepting mark's pov because it sounds certain is dumb. that ziv misunderstood the question is absolute speculation as is the notion that if ziv really had 80% he would be shouting it from the hilltops. Although the numbers dont hold up, given the choice of a) assume dr ziv is wrong b) assume the breakdown of the 500 is wrong, I choose b. All in trying to figure this out before the paper comes out in april.


Given the tenor of the above post, it's not worthy of a cogent reply. You have a one-word answer to a badly worded question to hang your hat on. Knock yourself out.

Suffice it to say, Bill, that it is possible to disagree with somebody without resorting to insults. I wish you the best...
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Postby Lyon » Fri Feb 19, 2010 5:31 pm

..
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