80% for CDMS - It's Real

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

Postby weegie1 » Sat Feb 13, 2010 12:01 pm

Can someone please clear this up for me.
Were people with CIS included in the MS group along with people with CDMS?
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Postby Lyon » Sat Feb 13, 2010 12:09 pm

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Postby Cece » Sat Feb 13, 2010 12:27 pm

Lyon wrote:I wouldn't wish this on anyone scorpion but from the sidelines I am finding this valuable to confirm that the problems I've had with these people isn't about me specifically but is specifically about their need to drive anyone into the ground who requires facts before joining the CCSVI cult.


It is a fact that Zivadinov divulged some information to a Canadian Press reporter who published it and even answered an email as to how she'd gotten the information (i.e. she got it directly from Zivadinov). It seems safe to assume that the full details of the information will be in the final results when they're presented at the April conference. Until then, yeah, we're speculating on exactly how the numbers crunch and what group this 80% figure applies to...but the 80% figure is a fact, from Zivadinov, who is the one doing the research.

From what I've read of your posts, Lyon, you've had some reasonable objections to CCSVI that will likely be proven one way or the other as research results come in. For me, it's just that research is slow and what affects me most is not if 56% of MSers have CCSVI or 80% or whatever the number it is, it's if I personally have it and what it means if I do (i.e. is it worsening my health?).
"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 JoyIsMyStrength » Sat Feb 13, 2010 12:58 pm

It's ok to disagree, just please be polite. Maybe that makes me a judge and jury and somebody making up rules, I don't know, people can choose to be offended if they like. But... folks will get more respect if they can agree to disagree without making disparaging, hurtful comments.
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Postby Lyon » Sat Feb 13, 2010 1:05 pm

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Postby LR1234 » Sat Feb 13, 2010 1:08 pm

I'm with Cece on this. The numbers of how many MSers have CCSVI are important but for me personally I Have had an occluded jugular vein, My UK dr's confirmed this via my venogram (they were fascinated and so suprised to see such an obvious problem especially as it was missed on the CT, MRV and doppler!).

So for me personally I need to make sure my veins stay open. If you want to call it MS fine,if you want to call it CCSVI fine either way it is still significant enough to need treating
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Postby Billmeik » Sat Feb 13, 2010 1:09 pm

Can someone please clear this up for me.
Were people with CIS included in the MS group along with people with CDMS?


ya looks like it. Perhaps dr ziv is interested in ccsvi as a diagnostic methodology to tell if someone really has MS.
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Postby Cece » Sat Feb 13, 2010 1:27 pm

Lyon wrote:Just a few days ago it would seem that Zivadinov was one of the good guys who shit gold. The day the results were released a lot of people were convinced that he was a piece of shit. Now, so soon afterwards everyone is already picking up the pieces


Yes...it is an emotional roller coaster, but the emotions are valid...the stakes are high. In the end I don't think it much matters which way this forum sways at any given time, it is the researchers who are carrying this work forward (as well as the advocates here who are getting the info to neuros, IRs, vascular surgeons, etc.) We're all just following it...really, really closely, with each minute detail being analyzed as much as our tired brains can...and if your point too is that we're sometimes landing on the side of irrational exuberance, then okay, point heard. I think everyone ventures into this has their hearts in their hands, which is an awfully vulnerable place to have them, because m.s. is a truly terrible disease and if CCSVI ends up being a viable treatment, then it could be life changing.
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Postby Lyon » Sat Feb 13, 2010 1:56 pm

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Postby weegie1 » Sat Feb 13, 2010 2:17 pm

Thank you Billmeik,
If people with CIS (we don't know if they have MS but they might) were included with the people with CDMS does that not completely invalidate the Buffalo results?
Would that not skew the results.
It does not sound too scientific to me and I am one of the optimists.
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Postby scorpion » Sat Feb 13, 2010 3:49 pm

As Weegie stated even if there were people with CIS how would that invalidate the results? I thought the arguemet was that the blockage was what led to an immune reaction and disabilty. So if the blockage is what causes the "chain reaction" would it not be there to cause the inital CIS? As with Zamboni's study there is no way to prove that 100% of the particpants in the study had MS but even if 10% did not have MS I do not see how this would skew the results. You are right fiddler you were just interperting what you have heard. Sorry.
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Postby Billmeik » Sat Feb 13, 2010 3:56 pm

that's why the 80% is so interesting. You throw out the borderlines you get 62%, you throw out the CIS you get 80%. Why would they be included in the first place? Dunno. Maybe 80% was to much for skeptics to handle in one mouthful so he's releasing it slowly. I'm a skeptic about progression in ccsvi. It sounds like something a neurologist used to studying a plastic system like the brain would come up with. Plumbing problems are different.
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Postby cah » Sat Feb 13, 2010 4:42 pm

Billmeik, think of varicose veins or CVI. Of course they can progress.

It really is a dilemma with CIS patients. You cannot really count them to the MS group. You cannot really count them as healthy control or "OND" either. Leave them out completely? Would that make the trial more or less representative? I can't figure it out.
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Postby Cece » Sat Feb 13, 2010 4:47 pm

I wasn't sure if chronic venous insufficiency progresses or not, so I googled:

"Prognosis
•Without correction of the underlying cause, venous insufficiency is inexorably progressive.
◦Subjective symptoms usually worsen over time.
◦In many patients, the skin eventually breaks down and nonhealing ulcers develop.
◦Patients have an increased lifetime risk of DVT and pulmonary embolism."

http://emedicine.medscape.com/article/1085412-followup

But that didn't really answer the question of whether CVI (and by extension, CCSVI) progresses. All I'm reading is that they symptoms get worse...it doesn't necessarily follow that the blockage gets worse.
"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 » Sat Feb 13, 2010 4:55 pm

What I don't find answered is why would a "sientific study" include people for whom a diagnosis is not clearly defined.
Does that not just muddy the waters?
Not make it inherenetly "un-scientificic"
Please help????
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