inconvenient truths

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

inconvenient truths

Postby Billmeik » Thu Jan 20, 2011 9:32 am

Ijust saw this on facebook

the primary irony here is your absolute hypocrisy. Apparently you only allow posts which meet your acceptance criteria Interesting that goes against the entire nature of your efforts in having new and alternative methods discussed in a free manner. Regardless, I wish your husband well and hope whatever method you guys attempt are more than successful. Please try and remember you created this site for the public, not personal, consumption


Im trying to get a handle on where ccsvi is these days.

wtf happened to that new zivadinof paper? Why can't I find it, and why isn't there a thread going discussing it? I mean I saw it once and it was quite large in its implications.

Is there a new ministry of truth emerging that sweeps uncomfortable facts under the carpet?

We don't want to be as evil as the regime that preceded us. I want to believe we're open to all new data.

Truth is I find the facebook site a bit of a collection of yes-men without the huge controversy and debate something like ccsvi deserves.
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Postby Cece » Thu Jan 20, 2011 9:48 am

The Facebook site reaches a huge number of people, Joan does a good job as do Sief Hart, Denise, Michelle Brown and many others. I am not sure what that post was about. For me I like the discussions we have here, I like the different format. But of course they have a discussion page now too.

What implications did you see in the Zivadinov paper? I thought it didn't have much impact on the question of the existence of CCSVI itself but was more a paper about the drawbacks of the original MRV methods and indicating that ultrasound doppler or full Haacke protocol MRVs or gold-standard catheter venograms are the way to go. I think rather than swaying too much to the excitement or disappointment when each paper comes out, I am trying to sit back and see the whole that is coming together or will be coming together as more and more papers emerge. I am also already convinced of CCSVI's existence in MS from the clinical evidence and the strength of the theory alone, at times it is good to have a reminder to remain a "healthy skeptic."
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Buffalo MRV Study

Postby Shayk » Thu Jan 20, 2011 9:50 am

Bill

Here's a link to a thread that discussed the Buffalo MRV study:

http://www.thisisms.com/ftopict-15256.html

and here's a link to the abstract:

Use of MR Venography for Characterization of the Extracranial Venous System in Patients with Multiple Sclerosis and Healthy Control Subjects

Hope they help.

Sharon
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Re: inconvenient truths

Postby scorpion » Thu Jan 20, 2011 10:00 am

Billmeik wrote:Ijust saw this on facebook

the primary irony here is your absolute hypocrisy. Apparently you only allow posts which meet your acceptance criteria Interesting that goes against the entire nature of your efforts in having new and alternative methods discussed in a free manner. Regardless, I wish your husband well and hope whatever method you guys attempt are more than successful. Please try and remember you created this site for the public, not personal, consumption[/quote]

Im trying to get a handle on where ccsvi is these days.

wtf happened to that new zivadinof paper? Why can't I find it, and why isn't there a thread going discussing it? I mean I saw it once and it was quite large in its implications.

Is there a new ministry of truth emerging that sweeps uncomfortable facts under the carpet?We don't want to be as evil as the regime that preceded us. I want to believe we're open to all new data.

Truth is I find the facebook site a bit of a collection of yes-men without the huge controversy and debate something like ccsvi deserves.


Emerging? It has been here since the beginning.
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Postby concerned » Thu Jan 20, 2011 10:49 am

From the discussion section of the Zivadinov study:

“We did not find significant differences between MS patients and HC subjects or between RR and SP MS patients in regard to collateral circulation. This is indeed an important finding because it does not support collateral circulation as a compensatory mechanism of CCSVI.”



It doesn't seem that the study was just discussing the uselessness of MRV at all to me.
more here: http://medicalmyths.wordpress.com/

(I'm posting that link mostly because it has the paper being discussed and someone's views on it, not because I think some blogger is our only beacon of truth as some would have you believe.)
Last edited by concerned on Thu Jan 20, 2011 1:41 pm, edited 1 time in total.
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Postby pklittle » Thu Jan 20, 2011 11:36 am

I havent been to the FB page, but I just want to say that I love your thread title!
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Postby cheerleader » Thu Jan 20, 2011 11:54 am

Holy flying hyperbole--
that woman posted Canadian MS Society fundraiser info, and started fights on three separate FB pages....so I deleted her Canadian MS Society post, since fur was flying....
there is no white-washing. Yikes. It had nothing to do with CCSVI. She was advertising a Canadian MS Society fundraiser and began fighting with Canadians....her post is still up on the Toronto page and the UBC clinic page. I just chose to remover her trolling. As admin, I get to do that.

And I've written about Zivadinov over and over again on this site and Facebook, but no one seems to remember...his research is showing the inconsistancies with STATIC MRVs....very different than the Haacke 3D time of flight protocol which measures flow, not just architecture. And tht includes COLLATERALS. The doctors are discussing this at the upcoming International Society of Neurovascular Disease Meeting in March. Come to Bologna and learn.

Bologna, March 14-15, 2011 Italy
CNR National Research Council of Bologna – via Gobetti 101

Major topics covered:
Ultrasound and MR imaging in treatment planning
The role of iron in MS and neurodegenerative disease
Perfusion deficits and hypoxia and possible relationships to CCSVI
New evidence of CCSVI in animal models
Related vascular problems: venous embriology, idiopathic intracranial hypertension, normotensive hydrocephalus, carotid surgery in stroke
CCSVI treatment: procedure and neurological outcomes
Genetic studies
Plethysmography
Flow dynamics: modeling the cerebral venous system


Why would Zivadinov even be involved if there was no there there??? This is what Zivadinov wants....
Standardized guidelines are needed to define parameters for the presence of venous anomalies

He and Dr. Zamboni want doppler US to be the standardized protocol.

http://www.isnvd.org/2010/11/annual-meeting-italy/

meet me in Bologna, and take up your beef with me in person. Talk to Zivadinov and Haacke and Zamboni....yes, I'm a real individual, working hard to keep doctors and patients in dialogue, and reporting back. Anonymous insinuation and nasty comments are the cowards' way...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Good stuff Cheer

Postby Gordon » Thu Jan 20, 2011 12:04 pm

Deleted
Last edited by Gordon on Thu Jan 20, 2011 1:07 pm, edited 1 time in total.
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Postby cheerleader » Thu Jan 20, 2011 12:09 pm

Gordon--
please. It's not about pharma. Zivadinov is interested in understanding CCSVI, and establishing a standardized protocol for venous anomalies. He does not like MRV....and he's mostly right. The only MRV that is proving correct is the Haacke protocol.
That's why he's going to Bologna.
Seriously. Come! Speak to the doctors for yourselves. That's how I started this in September 2009....listening to the doctors for myself.
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby thornyrose76 » Thu Jan 20, 2011 1:43 pm

cheerleader wrote:Holy flying hyperbole--
that woman posted Canadian MS Society fundraiser info, and started fights on three separate FB pages....so I deleted her Canadian MS Society post, since fur was flying....
there is no white-washing. Yikes. It had nothing to do with CCSVI. She was advertising a Canadian MS Society fundraiser and began fighting with Canadians....her post is still up on the Toronto page and the UBC clinic page. I just chose to remover her trolling. As admin, I get to do that.

And I've written about Zivadinov over and over again on this site and Facebook, but no one seems to remember...his research is showing the inconsistancies with STATIC MRVs....very different than the Haacke 3D time of flight protocol which measures flow, not just architecture. And tht includes COLLATERALS. The doctors are discussing this at the upcoming International Society of Neurovascular Disease Meeting in March. Come to Bologna and learn.

Bologna, March 14-15, 2011 Italy
CNR National Research Council of Bologna – via Gobetti 101

Major topics covered:
Ultrasound and MR imaging in treatment planning
The role of iron in MS and neurodegenerative disease
Perfusion deficits and hypoxia and possible relationships to CCSVI
New evidence of CCSVI in animal models
Related vascular problems: venous embriology, idiopathic intracranial hypertension, normotensive hydrocephalus, carotid surgery in stroke
CCSVI treatment: procedure and neurological outcomes
Genetic studies
Plethysmography
Flow dynamics: modeling the cerebral venous system


Why would Zivadinov even be involved if there was no there there??? This is what Zivadinov wants....
Standardized guidelines are needed to define parameters for the presence of venous anomalies

He and Dr. Zamboni want doppler US to be the standardized protocol.

http://www.isnvd.org/2010/11/annual-meeting-italy/

meet me in Bologna, and take up your beef with me in person. Talk to Zivadinov and Haacke and Zamboni....yes, I'm a real individual, working hard to keep doctors and patients in dialogue, and reporting back. Anonymous insinuation and nasty comments are the cowards' way...
cheer


I want to thank you, Joan, for all that you do for all of us, I have nothing but praise for your efforts! :)
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Postby Rokkit » Thu Jan 20, 2011 1:51 pm

cheerleader wrote:Seriously. Come! Speak to the doctors for yourselves.


Hey Joan, is this really an option, for the public to attend? I might do it.
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Postby Billmeik » Thu Jan 20, 2011 6:18 pm

so dr ziv published the famous 56/65 studies from november which if I remember were done with Mrv then a paper that proves how useless mrv is as a tool for finding ccsvi?
So this could be interpreted as proof that that early data was wrong and should be ignored, or as proof that ccsvi doesn't exist?
Glad to be corrected, this is being debated...
And nothing personal cheer.
I believe that following intuitions and using science to prove them right or wrong is a keyto problem solving . And there are moments in this where one needs intuitive faith. For me the fact that all the important data still seems to be unpublished in the mainstream journals is a reason to rely on this faith.
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Postby cheerleader » Thu Jan 20, 2011 6:58 pm

Billmeik wrote:so dr ziv published the famous 56/65 studies from november which if I remember were done with Mrv then a paper that proves how useless mrv is as a tool for finding ccsvi?
So this could be interpreted as proof that that early data was wrong and should be ignored, or as proof that ccsvi doesn't exist?
Glad to be corrected, this is being debated...
And nothing personal cheer.


The original BNAC study was done utilizing MRV AND doppler US. What Zivadinov is showing in this new study is that stagnent MRV ON ITS OWN is not sufficient to diagnose CCSVI. He and Zamboni want to make doppler US the standard pre-venography method. Dr. Haacke believes his MRV 3D time of flight/perfusion protocol is more conclusive, and will provide substantive follow-up. For those who wish to go to the Bologna conference and talk to the doctors and hear this discussion, here is the registration page for the ISNVD-
-you need t o be a medical professional, medical student or corporate entity to join. http://www.isnvdannualmeeting.org/registration.html

And it's hard not to take that original post and the title of this thread personally, Bill---you pretty much said I deleted something to withhold information and made a ministry of truth crack...when all I did was delete a thread about a Canadian MS Society fundaising event that was posted to provoke a fight on the CCSVI page, and soon devolved in flames. I'm admin over there...I can do that, even if "sara fox" gets angry at me. I don't mind clarifying studies on this site, but I don't like being called a liar.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby HappyPoet » Thu Jan 20, 2011 8:09 pm

Does anyone, excluding cheer, know why BNAC didn't try to replicate Dr. Zamboni's study?
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Postby eric593 » Thu Jan 20, 2011 8:55 pm

HappyPoet wrote:Does anyone, excluding cheer, know why BNAC didn't try to replicate Dr. Zamboni's study?


That is an EXCELLENT question, HP! :-)
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