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Unless I missed something, Buffalo hasn't published anything. They've only issued a press release.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?
Dr. Zivadinov spoke about this in Bologna: Here is the quote from my notes of the informal meeting the night before the conference--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.
Not urban myth---notes taken in Bologna by a country girl.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.
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.Rokkit wrote:Unless I missed something, Buffalo hasn't published anything. They've only issued a press release.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?
and to some people its important it happened in that order. Not MS then ccsvi.But she was positive for CCSVI and became positive for MS. Not any old disorder, but MS.
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%)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 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--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%)
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.cheerleader wrote:I would not call the BNAC numbers "false positives"---there were familial members related to pwMS included in the healthy controls
do fresh lesions heal completely after liberation?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 .......
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.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".
] minds set out to make advancements in what we already know. It could be medical knowledge and understanding .... or advancements in medical testing equipment .....