Why refering to buffalo study and not Kuwait

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

Postby Rokkit » Wed May 26, 2010 8:45 pm

patientx wrote:I think you should follow your own advice. The group at Buffalo did a fairly rigorous study, and actually published their results, and came up with 60% of MS patients showing CCSVI. And you claim to know their results are wrong. Yet, you're quoting a 90% number that comes from where?

Unless I missed something, Buffalo hasn't published anything. They've only issued a press release.
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Postby cheerleader » Wed May 26, 2010 8:52 pm

BooBear wrote:Did I read somewhere that one of the "healthy" controls who tested positive for CCSVI in the Buffalo study was diagnosed with MS six months later? Does anyone have solid facts on this one, or is this urban legend?

This individual would be a significant contributor if they were willing to step forward!

I wonder if the test for CCSVI causes the placebo-effect of MS when you are told it is positive. :twisted:


Dr. Zivadinov spoke about this in Bologna: Here is the quote from my notes of the informal meeting the night before the conference--

Dr. Patricia Coyle of Stony Brook University asks a question-
“How do we diagnose CCSVI?” The first answer comes from Dr. Zivadinov-
Doppler investigation is the beginning. If there is non-direction of flow in any body condition, or continual flow in the opposite direction- CCSVI is implicated. Transcranial doppler in the deep cerebral veins shows reflux. And then it is necessary to locate the stenosis. In MS, the jugular/Vertebral veins flow is consistently subverted. Dr. Zivadinov states that they had tested a 25 year old girl who had come into Jacobs as a control. A healthy girl, who presented with bilateral jugular occlusion. Months later, she had her first CIS attack of MS, and an MRI was done to show two lesions. She also has a familial history of MS. He reiterated that all of the doppler testing was blinded, yet it corraborated CCSVI in MS 100%.

Dr. Dake then stated that he had also tested a relative of a confirmed MS patient. A woman who had not been diagnosed with MS, but who presented at Stanford with jugular occlusion and a variety of neurological deficits, yet no MS diagnosis. She also showed lesion activity on an MRI, and he stented he occlusion the day before he flew to Bologna.


Not urban myth---notes taken in Bologna by a country girl.
http://www.facebook.com/note.php?note_id=130412202210
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http://ccsviinms.blogspot.com
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Postby costumenastional » Thu May 27, 2010 1:15 am

bumbing cause this last one is really cool.
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Postby frodo » Thu May 27, 2010 3:20 am

Anybody knows how controls were recruited?
Maybe some of them knew something was wrong with their health, and they entered the trial to get tested.
This could be a bias and could explain the high numbers of controls with CCSVI that were found.
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Postby BooBear » Thu May 27, 2010 3:54 am

Frodo, I am not sure the bias is there, or if it was, would matter.

If one of the healthy controls was not previously dx'd with MS, tested positive with CCSVI and later tests positive for MS, that is extremely significant.

According to the notes Cheer shared, the control had developed two lesions since she tested for CCSVI. If the subject decided to get tested because she wasn't feeling well, ok. But she was positive for CCSVI and became positive for MS. Not any old disorder, but MS.

I feel that this is extremely important. There is only so much that can be attributed to coincidence.
Three veins angioplastied.  One renewed life.  
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Postby patientx » Thu May 27, 2010 6:39 am

Rokkit wrote:
patientx wrote:I think you should follow your own advice. The group at Buffalo did a fairly rigorous study, and actually published their results, and came up with 60% of MS patients showing CCSVI. And you claim to know their results are wrong. Yet, you're quoting a 90% number that comes from where?

Unless I missed something, Buffalo hasn't published anything. They've only issued a press release.


I thought their paper was due to be published by now, but it looks like you're right, because I couldn't find anything. But Dr. Zivadinov did at least present his data during the NMSS webcast on CCSVI.
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Postby Billmeik » Thu May 27, 2010 6:41 am

But she was positive for CCSVI and became positive for MS. Not any old disorder, but MS.


and to some people its important it happened in that order. Not MS then ccsvi.
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Postby frodo » Thu May 27, 2010 6:52 am

BooBear wrote:Frodo, I am not sure the bias is there, or if it was, would matter.

If one of the healthy controls was not previously dx'd with MS, tested positive with CCSVI and later tests positive for MS, that is extremely significant.

According to the notes Cheer shared, the control had developed two lesions since she tested for CCSVI. If the subject decided to get tested because she wasn't feeling well, ok. But she was positive for CCSVI and became positive for MS. Not any old disorder, but MS.

I feel that this is extremely important. There is only so much that can be attributed to coincidence.


I agree completely with you. I am just trying to find a reason why there is so much difference among the false positives of Zamboni (0%) and Zivanidov (I think around 20%)
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Postby cheerleader » Thu May 27, 2010 8:36 am

frodo wrote:I agree completely with you. I am just trying to find a reason why there is so much difference among the false positives of Zamboni (0%) and Zivanidov (I think around 20%)


I would not call the BNAC numbers "false positives"---there were familial members related to pwMS included in the healthy controls (like the girl Dr. Zivadinov spoke of in Bologna-who was still included in the healthy controls percentage) Dr. Zamboni did not use relatives of MS patients in his healthy controls numbers. There were also "other autoimmune diseases" in the healthy controls. Dr. Zamboni broke this category out from his control group. Dr. Zivadinov addresses this in the NMMS webinar. His presentation is in after 30 minutes or so--
link

My question is why Dr. Gary Cutter decided to put familial relations and other autoimmune diseases in the "healthy controls" category, when he could have just as easily created a sub-category --I believe the BNAC results reporting is a bit confusing--but that is for another day. If you freeze frame the slides on the presentation, you can see all the categories.
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http://ccsviinms.blogspot.com
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Postby MrSuccess » Thu May 27, 2010 8:54 am

regarding my most recent post ..... I would like to make clear that my comment about healthy controls that have stenosis .... and are possibly at risk to develop MS ... without immediate intervention is not aimed at the Buffalo study.

These wonderful people at Buffalo can only investigate ...but not treat.

It is my great hope that Drs. V & B-W get heavily funded for their research and take the next step .... CCSVI intervention .

If so much as one so-called healthy control goes on to have MS ...
when it could have possibly been prevented .......

I want those who slowed or prevented CCSVI treatment to be held responsible :twisted: :twisted: :twisted:

I'm not adverse to a stiff jail term :idea:




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Postby Cece » Thu May 27, 2010 11:44 am

cheerleader wrote:I would not call the BNAC numbers "false positives"---there were familial members related to pwMS included in the healthy controls

But what of the fact that, when you look at the breakdown of which controls had CCSVI, it's about the same in both the MS familial controls and the unrelated controls? I think this negates the argument that the familial members being among the healthy controls made a difference. They found the same ratio of CCSVI in the familial controls as the regular controls.
"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 sofia » Thu May 27, 2010 12:43 pm

I think that is a fair question. We can use the Michael Specter denialism criterias on the reluctance to accept new theories as well.

1. Conspiracy theories ( vascular surgeons wanting pice of the cake, or their 15 minutes of fame )
2. Cherry picking ( only Buffalo study is worth watching, after all the other studies are forgin )
3. Moving the goalpost ( we need more proof, we need more proof, even if it is staring us in the eye we cant see it )

This enormous caution is in my opinion due to a reluctanse to try something new. No winnings have ever been made without a bit of risk.

I had liberation treatment done 2 weeks ago, and I far from regret it, even if I am not healed, I am feeling better and stronger, my everyday life is easier. To the researchers that is not relevant info, it is only anecdotal evidence, but to me it is the only thing that matters.

They say they need blinded trials, to rule out placebo. To you need to have a control group to fix a stenosed bloodvessle. Or can you say, stenosis found, stenosis fixed. Its broken, fix it!!
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby drbart » Fri May 28, 2010 8:16 am

MrSuccess wrote:regarding my most recent post ..... I would like to make clear that my comment about healthy controls that have stenosis .... and are possibly at risk to develop MS ... without immediate intervention is not aimed at the Buffalo study.

These wonderful people at Buffalo can only investigate ...but not treat.

It is my great hope that Drs. V & B-W get heavily funded for their research and take the next step .... CCSVI intervention .

If so much as one so-called healthy control goes on to have MS ...
when it could have possibly been prevented .......


do fresh lesions heal completely after liberation?

i'm really looking forward to the future of MS diagnosis, when your GP asks a few questions and tells you to go see an IR and get plumbed "before you develop MS".
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Postby Cece » Fri May 28, 2010 8:29 am

drbart wrote:i'm really looking forward to the future of MS diagnosis, when your GP asks a few questions and tells you to go see an IR and get plumbed "before you develop MS".

For me, with three young children...yeah, it makes me cry to imagine such an easy fix for them, if they've inherited this from me.
"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 MrSuccess » Fri May 28, 2010 3:40 pm

cece - take heart ... we are slowly and surely advancing the understanding of CCSVI and it's connection to MS.

Each and everyday brilliant young [ and some old :wink: ] minds set out to make advancements in what we already know. It could be medical knowledge and understanding .... or advancements in medical testing equipment .....

I suggest you spend some time checking these things out ..... it will lift your spirits :idea:

Was it only 1985 when the MRI was introduced ? I'll wager that they have come a long way since then ......

Everyday is fishing day.




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