suggestions for American journalists?

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

Postby skydog » Tue Aug 11, 2009 2:30 pm

Anyone here a member on the Mercola site. He might have people that would be interested, I know he is against the pharma approach and might find this worth following. If some one could post a comment on his site we might get a response. Cheers, mark
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Postby cheerleader » Tue Aug 11, 2009 3:56 pm

peekaboo wrote:Ditto Sharon's post

What about getting stent mfgr's a heads up? They could be the industry back up and $$$


I know Johnson and Johnson (Cordis stents) has given $ to Dr. Zamboni to help fund his research..

Hey! I made a Facebook page :) Jimmy suggested it, and I thought that was a terrific idea.
It's fun and easy....and I just started, so don't be too critical
It's called "CCSVI in Multiple Sclerosis" (to make it easy for folks searching to find it.) It'll get better, but I only had a half hour today.
link

Jamie...you ol' softy. We gotta put pressure on the docs to get moving on this. Everyday that passes, more people are diagnosed, more families are affected, people are progressing. There's no time to waste.
Thanks, Sharon. It'll be a quick trip to Bologna (never been before-done Milan/Venice/Firenze) for some good food and interesting conversation. Two of my favorites!
busy fingers... (idle fingers are the devil's workshop :wink: )
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Tue Aug 11, 2009 6:38 pm

Thanks for the Facebook page!

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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby bestadmom » Tue Aug 11, 2009 6:43 pm

Just logged off fb to log onto here! Thaks Joan, I'm a fan.

By the way I just got this email from Virginia Hughes:

Hi Michelle,

Thanks for letting me know about this. I already have other travel plans for that week, though.

Cheers
Ginny
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Postby javaneen » Fri Aug 21, 2009 7:13 am

Any luck finding any US reporters to go to the Conference in Sept?
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Postby cheerleader » Fri Aug 21, 2009 7:21 am

javaneen wrote:Any luck finding any US reporters to go to the Conference in Sept?


Nice to hear from you, javaneen...
Haven't found anyone to specifically come to the conference, but I do have confirmation for a feature this fall from a national journalist. Will update once more is known. I'm hoping some of the news wires will have their Italian desk medical writers in attendance. Lots of folks will be in Germany for ECTRIMS the following days. There is an official press conference with patients and doctors speaking as part of the Bologna event.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby javaneen » Fri Aug 21, 2009 7:27 am

just a though incase you haven't already found someone...what about Dr. Marie Savard. She is ABC's Good Morning America Medical Contributor. She is a big advocate for taking charge of our own health. She would love you Cheer and everyone on TIMS and all that they have done for themselves and loved one. You can reach her through eileen@drsavard.com

http://www.drsavard.com/index.php

Let me know if you need me to write any letters. You guys may already have someone lined up.
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Postby Needled » Fri Aug 21, 2009 7:47 am

Cheer said:
Lots of folks will be in Germany for ECTRIMS the following days.

And before that, the International Phlebology Conference in Monaco is from Aug. 31 to Sept. 4. Drs. Zamboni, Simka and others will be speaking on CCSVI there, also.
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Postby Sharon » Fri Aug 21, 2009 9:25 am

There is an official press conference with patients and doctors speaking as part of the Bologna event

The Hilarscere Foundation has spent millions of dollars on the CCSVI research. They no doubt have a detailed plan on how this is going to be released to the international press. It is going to be interesting to see how the medical community reacts. This research is not going to be an easy "sell"......I plan on doing my part in spreading the word.
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Postby LR1234 » Fri Aug 21, 2009 9:40 am

I just want it so badly to work and be validated by other dr's around the world!
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Postby Jamie » Fri Aug 21, 2009 9:40 am

This is about to....

E.X.P.L.O.D.E.
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Postby javaneen » Fri Aug 21, 2009 9:51 am

I hope so Jamie! I just checked out the ECTRIMS conference schedule and the only mention I see at all of CCSVI for the entire 4 day conference all about MS is in two poster sessions. I am suprised that there is not even a lecture or class about this. Maybe perhaps because there are a lot of neurologists there?

Here's the link...tell me if I am looking at it wrong.

http://www.congrex.ch/ectrims2009/

click on Scientific programmee to see all the topics for everyday.[/url]
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Postby Sharon » Fri Aug 21, 2009 10:12 am

Javaneen -

What I did notice from the website, was the drug companies and poster sessions...my goodness...they are all going to be there.
Maybe vascular docs are not allowed into a neuro convention :lol: :lol:
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Postby MaggieMae » Fri Aug 21, 2009 10:46 am

This is exactly what our neurologist asked me "why isn't it (CCSVI) being presented at the ECTRIMS conference in Germany." Big conference, so on, and so on.

He didn't say this because he thinks the procedure should be on the schedule, but because he feels that if it is so promising, it would be.

Maybe next year it will be. :)
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Postby CureOrBust » Fri Aug 21, 2009 8:01 pm

Timing I think. I would guess the schedule for finalising the conferences for an event like this would have been performed months ago, and maybe the people calling for offers, simply sent out the details to their known mailing list.

But I certainly am not going to wait till next year.
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