National MS Society one year studies update

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

National MS Society one year studies update

Postby cheerleader » Thu Jul 14, 2011 1:17 pm

Jul 14, 2011
The first-year progress reports from seven multi-disciplinary teams investigating CCSVI (chronic cerebrospinal venous insufficiency) in MS indicate that they are on track to provide essential data and critical analysis as these two-year projects move toward their completion. These studies were launched on July 1, 2010 with a more than $ 2.4 million commitment from the MS Society of Canada and the National MS Society (USA).

The research teams have already recruited a broad spectrum of people with MS and others to build understanding of who may be affected by CCSVI. In addition they are refining CCSVI imaging methods for accuracy and consistency in order to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process.


http://www.nationalmssociety.org/news/n ... x?nid=5261


cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Thu Jul 14, 2011 2:44 pm

Dr. Fox’s team has also gathered autopsy specimens of venous tissue from 9 MS tissue donors and 6 donors who did not have MS. The team first had to develop and standardize techniques for studying these specimens for signs of CCSVI. They are analyzing their data and have submitted abstracts reporting preliminary findings related to this pathology study and their scanning results for consideration at the international ECTRIMS (European Committee for Treatment and Research in MS) meeting in October 2011.

This seems promising!
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Postby bigfoot14 » Thu Jul 14, 2011 2:49 pm

In some cases they have also found that some participants who were contacted to go into the next phase of scanning informed the investigators that they had gotten the venoplasty procedure, which made them ineligible to continue in the study.



I guess some people couldn't wait......
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Postby CureIous » Thu Jul 14, 2011 3:24 pm

http://mobile.reuters.com/article/idUST ... 4?irpc=932

As if on cue, yet another negative neuro study hitting the news wire. Day 36 of 12 hour shifts here dear neuros, and all the drugs in the world could not, and did not do what free flowing veins did for me overnight, so pardon moi if me and my family give credit where properly due. Glad to see the REAL research moving forward....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby fiddler » Thu Jul 14, 2011 4:41 pm

OK, so nothing, not even links, to the negative study(ies)? Kind of makes it hard to ascertain their validity and value.
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Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby 1eye » Mon Jul 18, 2011 9:08 am

CureIous wrote:http://mobile.reuters.com/article/idUSTRE76D4NV20110714?irpc=932

As if on cue, yet another negative neuro study hitting the news wire. Day 36 of 12 hour shifts here dear neuros, and all the drugs in the world could not, and did not do what free flowing veins did for me overnight, so pardon moi if me and my family give credit where properly due. Glad to see the REAL research moving forward....


I think the FUD is lessening, and statements like "We would not advise our patients to be tested for this or act on any recommendations based on this sort of testing" betray a complete lack of concern for the health of the patient. Even if you don't get ballooned, wouldn't it be good to know that you have a reflux problem? Reflux cannot be good for you. Neither can insufficiency, especially when it comes to draining the brain. I happen to believe CCSVI causes MS, but even if I am wrong, it is a serious, congenital medical condition. Doctors advising patients to stick their heads in the sand is medieval.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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