80% for CDMS - It's Real

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

Postby L » Wed Feb 17, 2010 1:40 pm

Cece wrote:
frodo wrote:Somebody said in another thread that most controls were familiars of people with MS. This would explain the higher-than-normal prevalence of CCSVI among them.


That's one theory, anyway...we don't know how many of the controls were family members of people with m.s., so I can't agree with saying most were, just that some were. I personally have heard of only one, the father of someone here who served as a control while he himself served in the m.s. group...anything beyond that is guesswork! Which, granted, a lot of this is.

It's odd if Buffalo used family members to make up their control group when MS and apparently CCSVI is hereditary to a degree. I would like to see the data on the controls after excluding all family members of MSers!!


Perhaps they were doing it so that they could see if there was a famial link? Perhaps there were two poulations. It doesn't make any sense though I suppose to design the study in this way and then not to have mentioned it in the press release..
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Deficiencies in the press release

Postby fiddler » Wed Feb 17, 2010 1:53 pm

L, there were significant deficiencies in the press release no matter how you look at it. It's difficult to understand why the press release didn't mention that 80% of clinically diagnosed MS study subjects had CCSVI, or that "MS test subjects" in the published 55% included people who were not clinically diagnosed. Either some incompetent PR person did a random cut and paste of findings, or there is some hidden agenda that isn't apparent. Neither of those possibilities inspire confidence, but at least incompetent PR people can be fired.
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Re: Deficiencies in the press release

Postby L » Wed Feb 17, 2010 1:57 pm

fiddler wrote:L, there were significant deficiencies in the press release no matter how you look at it. It's difficult to understand why the press release didn't mention that 80% of clinically diagnosed MS study subjects had CCSVI, or that "MS test subjects" in the published 55% included people who were not clinically diagnosed. Either some incompetent PR person did a random cut and paste of findings, or there is some hidden agenda that isn't apparent. Neither of those possibilities inspire confidence, but at least incompetent PR people can be fired.
...Ted

Isn't it the strangest thing? I was thinking lots about it being a plan to appeal to sceptics by making it easier for them to come round to the idea, have a couple of months to get used to not dismissing the idea out of hand and then win them over with the april breakdown of the figures. But that seems a bit far fetched... It is very odd..

I was very pleased when I heard the 80% figure though..
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Postby Cece » Wed Feb 17, 2010 4:09 pm

MaggieMae wrote:I also read somewhere that Buffalo used ultrasound for the first 500, but do not venography.


As I understand it they used both MRV and Doppler ultrasound on the first five hundred but that the MRV data has not yet gone through the peer review process and that's why they only released the Doppler results so far.
"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 Billmeik » Wed Feb 17, 2010 5:38 pm

Isn't it the strangest thing? I was thinking lots about it being a plan to appeal to sceptics by making it easier for them to come round to the idea, have a couple of months to get used to not dismissing the idea out of hand and then win them over with the april breakdown of the figures. But that seems a bit far fetched... It is very odd..



ya thats about my guess. A sales job to the skeptical powers that be.
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Postby astro » Wed Feb 17, 2010 8:07 pm

Perhaps they want to steal the show at the April conference, but I don't understand this strategy, I guess. Good science is good science, and shouldn't have to apologize or temper results so they can be more easily "swallowed" by a skeptical community. Just the opposite, these folks are now saying "see, it's only 55%. Told you your hope was misplaced."

If 80% is the number for CDMS, then shout it. No need to leak it to just one reporter in Canada.
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Postby Billmeik » Wed Feb 17, 2010 8:23 pm

how about this. There was no intention to mention the cdms numbers unless asked and the reporter was smart enough to ask. So now the part of the story that was supposed to come out in april is out already. Maybe someone had mercy on the poor patients who have tied lots of hope to this..
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Postby marcstck » Wed Feb 17, 2010 9:52 pm

Accidently first posted this to the wrong thread, this is where it belongs...

I don't understand how the 80% number for CDMS holds up mathematically given the rest of the study numbers.

If CIS patients did indeed display CCSVI 38% of the time, and the combination of CDMS and CIS cases displayed CCSVI approximately 56% of the time, then the 80% CDMS number would only hold up mathematically if the tested CDMS and CIS populations were equal in number.

Instead, we know that the CDMS:CIS ratio was more than 4:1. Given that ratio, the CIS incidence of CCSVI it would have to be much lower, somewhere in the neighborhood of 8%, to make an 80% number for the clinically definite multiple sclerosis population stand up mathematically.

Am I missing something?
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4 to 1

Postby fiddler » Wed Feb 17, 2010 10:03 pm

Markstck, where did you learn that the CDMS to CIS ratio was 4 to 1?
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Re: 4 to 1

Postby marcstck » Wed Feb 17, 2010 11:47 pm

fiddler wrote:Markstck, where did you learn that the CDMS to CIS ratio was 4 to 1?
...Ted


Various outlets have reported that the 500 test subjects broke down as follows: 280 clinically definite MS, 161 healthy controls, and 59 clinically isolated syndrome. The ratio is actually 4.75:1.

I believe the 80% number represents a subset of patients with more severe MS, probably as judged by EDSS...
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Strange

Postby fiddler » Thu Feb 18, 2010 4:51 am

Marcstck, that doesn't appear to jibe with the numbers that Zivadinov gave the Canadian Press reporter and his later response to Billmeik in the MS-Direct thread. "Stranger and stranger" said Alice...
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Postby weegie1 » Thu Feb 18, 2010 5:33 am

Can someone please give me a concise definition of what "clinically isolated syndrome" is.
Thank you
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Postby LR1234 » Thu Feb 18, 2010 5:40 am

I think CIS is where there is evidence of 1 demylinating attack on the nervous system. I think to be diagnosed with MS you have to have at least a couple of attacks (see Mcdonald criteria).
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Postby weegie1 » Thu Feb 18, 2010 5:58 am

Thank you LR1234 for the reply.
I read over the McDonald criteria.
Not really any clearer in my mind as to the significance of the split in the results.
Comparing vein malfunction directly to degree of disabilty would seem a more obvious comparison to me.
Maybe they did, I get more confused the more I read about this.
And sadly I can't blame MS for that.
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Postby LR1234 » Thu Feb 18, 2010 6:20 am

I know what you mean, I think its hard for any of us who are not scientifically minded to get our head round all these theories/statistics/diagnostic parameters! you are not alone!:)
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