CTEVD Study at Buffalo Neuroimaging Center (CCSVI related)

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

Postby zap » Thu Oct 15, 2009 5:23 am

Really glad this article came out, been spreading it far and wide ... in previous efforts to spread the word, people wanted a plain-english article, not research or TIMS postings, so this is really helpful - especially because, as others have pointed out, it flat out says "this might be the cause of MS," instead of pussyfooting. :D
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Postby bestadmom » Thu Oct 15, 2009 5:25 am

Thank you for posting this Sawdoggie. Can you continue to post links as they pop up? It is so exciting.
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Postby zap » Thu Oct 15, 2009 6:32 am

Zivadinov has roots in Italy, I wonder if that was how he got into this:

Founding Director, Trieste Neuroimaging Analysis Center
Department of Clinical Medicine and Neurology, University of Trieste, Italy
1997 – 2002

Chief Researcher, Multiple Sclerosis
Center for Diagnosis and Treatment of Multiple Sclerosis
Department of Clinical Medicine and Neurology, University of Trieste, Italy
1999 – 2002

Neurologist on Night Guard Duty, 4th Sanitary District “Medio Friuli”
San Pietro al Natisone (Udine), Italy
1999 – 2002


http://www.bnac.net/wp-content/uploads/ ... 6-1-09.pdf

A good article about him here:

http://www.nacional.hr/en/clanak/38074/ ... usinessman

... although my paranoid side gets worried about his reliance on big pharma dollars ... in my imagination it is plausible that those who stand to lose billions if MS is a vascular condition would organize a well-publicized study that is corrupt, with the goal of discrediting CCSVI in the public eye and burying it ... 8O

Robert Zivadinov adds that clinical research is the most profitable area of work his Centre does. "We are a centre that reads the findings of magnetic resonances for multi-centre clinical research, which means that about 100 different centres around the world send us their magnetic resonance shots for our analysis. The analysis and research is done in collaboration with the world's largest pharmaceutical companies who provide massive funding for this kind of research, and that is one of the aspects of the financing of our centre. We currently cooperate with five pharmaceutical companies for whom we are working on five big clinical research programs." Zivadinov points out that pharmaceutical companies are in recent years exceptionally interested for research into mediations for multiple sclerosis. While there were in 2001, he says, only a few such companies, there are currently at least twenty that are launching research linked to multiple sclerosis.


Of course I am aware that this is pure paranoia at this point! (But if the Italian research looks positive, Dake's stent patients do good, but then this Buffalo study comes back negative, you can bet I'll be letting the paranoia come to the forefront of my mind. :) )

Fortunately, I am sure his center will find plenty of profit in workng with the intensive imaging/MRI requirements of this potential new paradigm ...
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Postby cheerleader » Thu Oct 15, 2009 7:00 am

Here's an actual TV NEWS story on the Buffalo release-


SUNY Buffalo news

cheer

(Zap- SUNY Buffalo neuros have worked w/Dr. Zamboni before. Dr. Zivadinov is in charge of the imaging part of the study...no worries. Even if they wanted to somehow monetize this with pharma, Dr. Zamboni's Liberation procedure has already proven successful, and I believe Dr. Dake's stenting will show the same positive results.)
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby SammyJo » Thu Oct 15, 2009 7:31 am

I've been forwarding all the CCSVI info to Stuart's MS newsletter http://www.msviewsandnews.org/ He has it on the top of his site and blog today

http://wwwmsviewsandrelatednews.blogspot.com/2009/10/breaking-news-ub-neurologists-try-to.html
Last edited by SammyJo on Thu Oct 15, 2009 8:03 am, edited 1 time in total.
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Postby Rokkit » Thu Oct 15, 2009 7:51 am

Dr Dake better get ready for an avalanche. Here's what's about to happen: People are going to hear about this, search the net, find TIMS and call Dr Dake.

And as for TIMS, get ready for an onslaught of newbie questions. I wonder if it wouldn't be a good idea to create a new sticky, a kind of "frequently asked questions" version of the monster thread. Something less daunting we could direct new people to.
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Postby Sharon » Thu Oct 15, 2009 8:01 am

Rokkit - have you noticed how many newbies we have this past month? You are correct, there are going to be more. We have the thread "Getting Ready for Stanford" - maybe that could be put into a "sticky". The other newbie questions - oh, my goodness!., I think we just need to be ready to direct them to a TIMS topic -

This is going to be fun!

Sharon
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Postby cheerleader » Thu Oct 15, 2009 8:11 am

I have been referring folks from the Facebook page to come on here and discuss all things CCSVI. Do you guys think the "Just the Facts, Ma'am" might be a good sticky?
http://www.thisisms.com/ftopicp-58782.html#58782

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu Oct 15, 2009 8:14 am

Here's an idea TIMSers:

Does anyone think it would be an advantage to have a whole thread for MEDIA stories? Call it media even possibly make it a sticky (or would that be too many sticky's?)

Everyone who posted one of these could repost in that thread?

It seems to me that perhaps a newbie would appreciate being able to click through a thread of such information and see all those stories in one place? It is a different kind of information than the research thread....

just a thought........... :?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Thu Oct 15, 2009 9:36 am

Cheer and Marie - both good ideas - "Just the facts would make a good "sticky". Marie I like the idea of the media "sticky" but I bet it would get hijacked. We all get so excited when we find news reports -- I am afraid we would forget it is a sticky and start posting to it.

For the newbies, I think we need to get a memo on each sticky why it is a "sticky" and that it is not for posting comments.

Sharon
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1st CCSVI is on google news alert for "multiple scleros

Postby radeck » Thu Oct 15, 2009 10:59 am

This article today came with my google news alert email:

http://www.buffalonews.com/cityregion/b ... html?imw=Y

The buffalo release is definitely causing good publicity...
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Postby mrhodes40 » Thu Oct 15, 2009 11:01 am

I agree too may "stickies" is plain obnoxious

What about if I added a section at the way bottom of research called Media reports..................

It sounds like a pain but it could make a place for it, but would anyone reference it?? I am not even sure people look at the constantly updated research thread ..................... I reference it all the time, but I amy be totally weird....I like c-span too. I am a mega nerd :roll:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Jamie » Thu Oct 15, 2009 11:51 am

cheerleader wrote:I have been referring folks from the Facebook page to come on here and discuss all things CCSVI. Do you guys think the "Just the Facts, Ma'am" might be a good sticky?
http://www.thisisms.com/ftopicp-58782.html#58782

cheer


Yes!!!

I've said it loads of times.

I keep searching for it to forward to people.
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Postby muse » Thu Oct 15, 2009 12:45 pm

Dear cheer "Just the facts” would make a very, very good "sticky"! I can see it at our place. My translation Fakten, Fakten, Fakten….of your brill post is one of the most visited threads and a great help for all the newbie who are coming to our forum.
Over the time a did some additions which were inspired by the “Experts” :evil: of the German MS society.
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http://csvi-ms.net/en
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Postby SammyJo » Thu Oct 15, 2009 12:48 pm

Who is maintaing http://csvi-ms.net/en That would be a good site for all CCSVI resources.

I had an unused domain that I started putting all the CCSVI links and patient resources on, just so I had a quick link to send to people. Can't be hijacked! if this looks useful & anyone wants to give me suggestions let me know.

http://healingpowernow.com/
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