Multiple Sclerosis Assoc of America - CCSVI article

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

Multiple Sclerosis Assoc of America - CCSVI article

Postby Sharon » Fri Dec 11, 2009 3:38 pm

The MSAA (Multiple Sclerosis Assoc of America) has released an article by Dr. Jack Burks, MSAA's Chief Medical Officer, in which he talks about CCSVI. Here is the link http://msassociation.org/news_center/ar ... sp?a=ccsvi

I am in the process of reading the article - will comment later.

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Postby Lyon » Fri Dec 11, 2009 4:06 pm

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Last edited by Lyon on Tue Nov 22, 2011 3:26 pm, edited 1 time in total.
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Postby Rokkit » Fri Dec 11, 2009 5:42 pm

I thought it was excellent. What else can we expect anyone to say at this point?
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Postby ozarkcanoer » Fri Dec 11, 2009 5:44 pm

Yes... Fair and accurate, and hopeful.
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Postby cah » Fri Dec 11, 2009 5:49 pm

Moreover, it is very well written and understandable for laypersons. No gobbledygook. Well done!
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Dr. Jack Burks

Postby Montana » Fri Dec 11, 2009 6:30 pm

Dr. Burks is a very thoughtful intelligent man who has been involved in MS research for a long time. His article gives a good overview of CCSVI. Since he mentions the study being conducted in Buffalo, I am disappointed, however, that he did not also mention the other American studies of Dr. Dake or Dr. Haacke, nor the many international collaborative studies being conducted.

Dr. Burke urges caution and waiting for clinical trials. I'm sure he realizes that without some of us being willing to participate in those trials, they cannot occur and we will not learn any more than we now know about Dr. Zamboni's very important research. I commend the courage of the physicians and patients helping to expand this body of knowledge.

Dr. Burke did not mention that venous insufficiency is a legitimate cardiovascular abnormality that deserves treatment by qualified surgeons and paid for by insurance companies. If it is found in an MS patient, that person is no less deserving of treatment. If it helps his/her MS, that is a wonderful benefit.

Dr. Burke suggests that some of you are "taking a loan" or "thinking of selling" your homes to correct CCSVI. If that is true then this country needs universal health care.
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Postby hoodyup » Fri Dec 11, 2009 6:50 pm

I've only been aware of CCSVI since Sept of 09. At that time it seemed like it was only being discussed on this board. Fast forward only 3 months. Everyone in the MS landscape is talking about it. It looks like this thing is picking up steam thanks to the people here who have followed Cheers lead and ran with the torch. I am excited to be witnessing what promises to be a huge step forward in solving the MS puzzle. Soon the the balance will shift and all the reputable docs will be saying "CCSVI? I supported that from day one. Me and Zamboni are like, best buds, ya know". That's what I'm saying, anyway. I love that guy.
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Postby selkie » Fri Dec 11, 2009 7:28 pm

Very hopeful, and much better than the NMSS response - I'm withdrawing my support from NMSS & giving it to MSAA instead. They've also been very helpful with supplying MS patients with free items like cooling vests, etc. Their track record is a good one, and I hope the medical institutions take heed of this call for more wide spread trials. CCSVI testing needs to be available to any MS patient who wants it.

Amen!
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Postby Sharon » Fri Dec 11, 2009 9:00 pm

Bob (Lyon), Sorry for the delayed comments, but I had other priorities this evening - my granddaughter's Christmas play :)

First, a little about the author of the article. Dr. Burks started one of the first MS centers in the United States - in about 1979 he started the Rocky Mtn MS Center. He is well known throughout the world as a top research neurologist. He is on the speakers bureau for many of the pharma companies which sell the DMT's. IMHO, this is why the article is so important. He is stepping out of his comfort zone and saying, we need to look at this new paradigm of CCSVI. Because of his stature in the neurological community, I think the article will give other neuros a reason to follow the research --- at least this is my hope.

Dr. Burks has been following the story of CCSVI since May. At first he was a bit skeptical -- then the idea became interesting -- then I went to Stanford and he really became interested. Burks is a doctor who advocates for his patients and their issues. He will not be on the sideline watching and waiting as the CCSVI story develops. He will be an active participant.

Now about the article.... I thought it was well balanced ---- it was accurate --- he did not take the research data out of context and he did not speculate about the findings. He is calling for science to "think outside of the box" in order to develop further treatments.

This has been a good day for CCSVI.

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Exhale

Postby SandyK » Fri Dec 11, 2009 10:13 pm

I just let my breath out. This is a giant step forward for MS. A neurologist I used to see many years ago talked about this man and I live in a tiny place. I am so relieved. All of the email and phone calls that have gone unanswered don't seem like such a waste of time anymore. I am going to keep bugging and nudging until they hear my voice!
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Postby Billmeik » Fri Dec 11, 2009 11:05 pm

you know the restenosis relating to further ms attacks IS a successful result.

In 100% of patients the model was correct.

To say 'they're only at 50% is sort of wrong'. Also they don't mention the small replicating studies at buffalo and stanford that got 100%
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Postby CureIous » Fri Dec 11, 2009 11:37 pm

Thanks for the post and analysis.

Mark.
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 MSUK » Sat Dec 12, 2009 1:20 am

Thanks for posting the link, to what is probably the most concise, unbiased and easy to read article on CCSVI and the proposed treatment of same, on the Internet.

I have recommended it to the MSRC "Boarders" and added a link to it on the MSRC's CCSVI pages.

Thanks again.

squiffs.
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Postby Loobie » Sat Dec 12, 2009 6:33 am

This is a great article. And especially so for us that WANT to see "good press". It really has the same tone as all the others, but in a much more open minded and compassionate way. They ALL are saying proceed with caution and we'll have to get more data and all that. It's just that this guy obviously understands the mental and emotional dynamic that is going on with his target audience.

I thought it was great, but with the exception of the one (damn, I forget which country!), I think that all of them are like "we should look further", which I would say is really all our main goal. Yes, we want it now. But we have to keep in mind that there will have to be clinical study based proof. Once we have that, you'll probably be able to get this procedure all over the place. This article was great and I think it's because Burk understands MS and MS patients maybe better than the rest of the authors of the other articles. The one from Canada pretty much read the same way, but Burk keeps absolutes out of his writing. You can't find "you shouldn't even have the tests done until it's proven", which seems to throw us all into a bit of a lather. This one was great Sharon!
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Postby frodo » Sat Dec 12, 2009 6:52 am

Billmeik wrote:you know the restenosis relating to further ms attacks IS a successful result.

In 100% of patients the model was correct.

To say 'they're only at 50% is sort of wrong'. Also they don't mention the small replicating studies at buffalo and stanford that got 100%

Wow. I never thought of that. In fact, that people with restenosis make the role of some kind of control group!!!!
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