The AP article!

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

The AP article!

Postby lucky125 » Mon Mar 22, 2010 2:03 pm

Could have been better, could have been worse. But hey, it's publicity!


Testing new MS theory as patients demand care now

http://tinyurl.com/yhflk6r

It has already been picked up by the NY Times, Atlanta Journal Constitution, Seattle Times, and the San Jose Mercury news. And it's only been a few minutes!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Rokkit » Mon Mar 22, 2010 2:12 pm

I think it's a great article! Just what we need to get things going in the U.S.
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Postby Habenoughyet » Mon Mar 22, 2010 2:42 pm

Wow... I'm actually quite surprised by how "non-biased", ie "non-negative", the report was... Congrats Lucky125!!! And thanks :wink:

HEY
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Postby Johnson » Mon Mar 22, 2010 3:39 pm

It is very heartening that they finally pointed out that the loss of Holly was not a result of the procedure. To me, that was one of the highlights.

I had the vaguest impression of an endorsement of the idea, by the writer.
My name is not really Johnson. MSed up since 1993
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Postby shye » Mon Mar 22, 2010 3:51 pm

Yes, felt like a very positive article to me-
So glad for you Lucky!
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AP article

Postby GApeach » Mon Mar 22, 2010 3:52 pm

I was wondering what the "fly-by-night places" were that the Georgetown neurologist mentioned. Otherwise, I'm thrilled to see an article showing up in so many media outlets.
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Postby Habenoughyet » Mon Mar 22, 2010 4:44 pm

Johnson wrote:It is very heartening that they finally pointed out that the loss of Holly was not a result of the procedure. To me, that was one of the highlights.

I had the vaguest impression of an endorsement of the idea, by the writer.

The fact that Holly's death wasn't attributed to CCSVI was the positive of the article.

HEY[/b]
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Postby pegmegrund » Mon Mar 22, 2010 4:44 pm

I think the story is great. I'm glad to see it picked up by so many news organizations.

Lucky - thank you for agreeing to be interviewed! Good job. :D And even the feet got a mention! :lol:
Last edited by pegmegrund on Mon Mar 22, 2010 5:36 pm, edited 1 time in total.
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Postby Cece » Mon Mar 22, 2010 5:26 pm

It always comes back to the feet!!!

Great article!! For once I hope the media takes it and runs!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby lucky125 » Mon Mar 22, 2010 5:49 pm

Hi everyone,

Just wanted to respond to a couple of comments.

1. I had a heated discussion with the reporter about Holly. She seemed to want to blame her death on the procedure because, as a result of it, she was on Coumadin. I was so relieved that she did the right thing in the article.

2. I think that the "fly-by-night" comment by Dr. T was his way of warning us all to be very careful about who we let touch us. He is worried that doctors are going to see $$ in our veins, and not look out for our best interests.
I also believe that he is more enthusiastic than he lets on in the article. I understand that he had to put on his serious doctor hat for the press, though.
Ah yes, the feet. Dr. T showed her the before and after videos he took of my feet!

I have a friend in PR who said that this article will probably be in the Health sections of lots of major newspapers tomorrow. I didn't know that Tuesday is Health day in lots of papers. I just know about the Washington Post. Silly me; what do I know?

Thanks for all of your kind words!
Nicole
(since the world now knows my name and where I live, gulp, I can certainly sign my post here!)
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby ozarkcanoer » Mon Mar 22, 2010 5:54 pm

lucky,

I was so excited about the article in the NYT and AP that I sent both of them to my neuro and my neuroradiologist's nurse and my academic contacts !!! Thank you, thank you, thank you !

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Postby lucky125 » Tue Mar 23, 2010 4:28 am

It's NOT in the Washington Post's print edition Health section. :(
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby lucky125 » Tue Mar 23, 2010 9:29 am

my friend in PR just sent me an excel spreadsheet with all of the outlets that picked up the story.

571 newspapers, websites, magazines, radio, and tv stations! The total circulation is 24,638,559. She was blown away by those numbers.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Wichita » Tue Mar 23, 2010 10:23 am

Congrats lucky125, and to the author of the article, I am so happy to see an unbiased and factually accurate story in US newspapers!

In spite of all the grass roots efforts to get the word out about CCSVI, I think it has been one of the best kept secrets (within the US) in history.

Up until now, whenever a doctor starts offering testing and treatment, he is buried in 10,000 emails within a few days. Soon it will be 100,000 emails per doctor.

Right now our capacity to treat CCSVI is tiny - there are more new cases of MS diagnosed each day than there are liberation procedures done. My hope is that some day soon MS will start losing the numbers game. Certainly the demand will be there, boosted by articles like this one.
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Postby thisisalex » Tue Mar 23, 2010 11:03 am

hey Lucky

thank you for taking part of this story! great article, and AP means it is goin to be all over the world... waiting for it in Hungary :)
take care
alex
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