My posting to CNN; has anyone else contacted the U.S. media

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

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Postby leetz » Mon Dec 28, 2009 7:15 pm

Hopefully Meridith Veira will fight the cause...her husband needs her to as well us!!!Good Work!!!

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Postby Moom9335 » Tue Dec 29, 2009 9:25 am

Dec. 29 issue of NY Times has an article titled In War on Cancer, Old Ideas Can Lead to Fresh Directions. The author is Gina Kolata. The main point is that a scientist who's ideas about cancer were ridiculed and dismissed are now being re-discovered and studied.

The parallel with CCSVI and DR. Schelling is obvious. I have written to her and given her all the references from our sticky re CCSVI.

Try sending her an e-mail at scitimes@nytimes.com. She writes in the ""forty years' war" series. Include the CCSVI references.

Someone has to respond eventually. :x
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Postby selkie » Tue Dec 29, 2009 11:55 am

I like the idea of picketing - but since I can't drive and live in an isolated region of Hawaii where there is no knowledge of CCSVI, I can't participate.

Shouldn't the NMSS or the MSAA be picketing on our behalf? Where are our advocates? A lot of us are too disabled to picket. I've asked local media to cover the story and got ZERO response. My neuro shrugs his shoulders and doesn't even know who Dr. Zamboni is.

I am so frustrated it's beyond belief. And my thinking is so disorganized, I can't think of what to do.

I would think Meredith Viera would be all over this - why hasn't Montel or Teri Garr or someone with clout mangaged to get U.S. media to cover this?

We need something organized and where are our advocacy organizations to help us when we need them?
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Postby zinamaria » Tue Dec 29, 2009 4:03 pm

Below is part of the 'mission' statement from the Montel Williams MS Foundation:

"The Montel Williams MS Foundation was established to further the scientific study of MS in October 2000. The goals of The Montel Williams MS Foundation are to provide financial assistance to select organizations and institutions conducting the most current research, to raise national awareness about MS, and to educate the public."

And then again this is on the 'front' page of the site:

"Dear Friends,

Thank you for visiting montelms.org. In March we launched a new campaign: One Dollar, One Step Closer to a Cure for MS™. Why so modest a request? Because I believe in the power of many united for a common cause. Because I have seen it work time and time again in my own life."

In my letter to the foundation I not only asked Montel Williams to get involved with the current research on CCSVI, I informed him that IT IS THE MOST CURRENT research, per his mission statement.
I have not heard back from the foundation and this is nothing short of alarming.
I just decided as I wrote this that I am going to send them an email every day, starting tonight, until they respond, I mean every day! Perhaps someone will notice the same email coming in daily...

I am going to find a way to contact Teri Garr as well.
Is this not in their best interest????? Unbelievable, really, the silence.

Peace to all of you wonderful people here on this site, And Happy New Year, with the hope for renewed, and continued health and happiness for all of us in 2010.
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Postby zinamaria » Wed Dec 30, 2009 4:55 am

Well, I cannot find a way to contact Teri Garr, I searched online all night, but I am emailing the Montel Foundation every day with the same letter. This is day 4.

I encourage everyone to get on his site to start spreading the word on CCSVI. They have a blog, so I registered and am waiting for 'approval' and in the meantime I scouted their forums; NOT ONE entry about CCSVI..Maybe I missed it, but I am surprised by the fact that these are all people like us with MS, suffering and trying to find information, and I see no mentione of Zamboni.
And the word CURE is all over Montel's site!
Okay, I am not down on Montel, it's just that when you are a celebrity and and have a foundation dedicated to a CURE, you would think he would be up on the latest research! So we need to keep messaging.

Clearly there is work to be done to spread this message of new hope. And I imagine his blog is not the only one where there is no discussion of CCSVI..So let's get out there to our community of fellow MS'rs and spread the word.

Anyone else having this experience on other blogs? Just goes to show how potent TIMS is, and how much valuable and important information is being discussed here.

Peace,
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Postby chrishasms » Wed Dec 30, 2009 10:23 am

I am in the process of making brochures and fliers.

I am doing all I can to get MS people in Denver CO on board with helping me but they are all scared I think. They all have this idea they won't be able to see a neuro if they shake the boat. I guess a neuro wiggling a finger, and tapping a tuning fork is so important, just to have them say there is nothing else they can do.

I suggest you talk to everyone you know locally who has MS and make sure they are aware of this. Next you need to show up at the walks and bike rides with picket signs and the brochures to hand out. The only way the MS centers or society's will ever notice is if we make waves.

So come May in Denver CO I will be at the MS walk and bike ride here, with a sign and brochures to hand to anyone who will listen.

I'll reiterate my feelings, you will get no where trusting your doctor to do this legwork so it is up to us.

And I disappear again....
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why wait? Picket now.

Postby msh » Wed Dec 30, 2009 10:41 am

Yes, it is cold outside.
I am up in NY from Florida fo a visit with friends who have MS and my family (who doesn't). Nothing is being done here and there are countless medical schools, universities and teaching hospitals.
The MDs who collaborated on a study with Dr. Haacke and others do not respond. Dr. Grossman (a neuroradiologist) and Dr. Herbert (a prominent neuro) don't respond. Dr. Herbert has not informed his own patients of the availability of screening, this I know for a fact. Why? I contacted NYU dept of radiology about the CCSVI protocol, they said to email, I did and also sent an email to Dr. Grossman and he did not respond. The email sent to radiology was to one of the researchers on their study-I guess if you are not on their target list and of interest to them then you get nothing.
WHen my son was sick and we found it was a rare genetic muscle disease (GSD) I hit every major medical center in NY where I lived at the time. The website for GSD, like this one provided an excellent forum but seem to be getting more accomplished. To prove this there is a new movie coming out next month called "extraordinary measure" about GSD/Glycogen Storage Disease. FYI-if you all think MS is complicated, GSD has at least 10 subgroups and those subgoups (!-0) have anywhere from 2-4 additional subgroups and like MS hits everyone differently but can affect the liver or other organs as well as the muscles (my son has type 3 c or d and is one of the milder cases but was very sick and to this day can't run but is healthy otherwise).
The people on the GSD site seem to be more of the activist type, perhaps because it is their kids that are affected.
There are only 2 specialists in this country for GSD but we can reach them and get appts and the one we use calls back IMMEDIATELY and embraces input from parents and does his own research.
Perhaps people with MS need to shout louder and turn in to activists.
NYU is a premier teaching and research facility. Someone should find their donors and start complaining. Call the hospital administrator.
PICKET!! can you imagine the sight of a hoard of people with MS in midtown manhattan picketing? Guaranteed coverage. Get Meredith Veira and Montel Williams to join you.
I am appalled by the lack of interest in this. If there is a weakening in the vein walls of people with MS you can have a rupture and death. It should be part of a routine screening like mammography is
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Postby cheerleader » Wed Dec 30, 2009 10:51 am

Michelle-
Have you tried Dr. Timothy Clark at NYU? He is the head of the interventional radiology dept. I will reiterate, once more, that the neurologists are not trained to diagnose and treat CCSVI. Yes, they have the equipment, but they do not treat venous disorders. I went to the interventional radiology at Stanford...the doctors there understood Dr. Zamboni's research.

I think a respectful letter, with the CCSVI/Liberation procedure Zamboni papers would be a good introduction. Dr. Clark would be familiar with Dr. Michael Dake's work and would be a good name to mention.
good luck-
http://www.med.nyu.edu/interventionalrad/physicians/
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: why wait? Picket now.

Postby patientx » Wed Dec 30, 2009 11:25 am

msh wrote:...The website for GSD, like this one provided an excellent forum but seem to be getting more accomplished.

...The people on the GSD site seem to be more of the activist type, perhaps because it is their kids that are affected....

...Perhaps people with MS need to shout louder and turn in to activists.
NYU is a premier teaching and research facility. Someone should find their donors and start complaining. Call the hospital administrator.
PICKET!! can you imagine the sight of a hoard of people with MS in midtown manhattan picketing? Guaranteed coverage. Get Meredith Veira and Montel Williams to join you.
I am appalled by the lack of interest in this.


It seems like this is becoming a trend at this thisisms. People, for some reason, come here posting rants and disparaging people who have MS - they aren't active enough, they aren't radically protesting, they brought MS on themselves.

Or is it the same poster?

Makes you long for the old days, when it was more about sharing information related to MS.
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Re: why wait? Picket now.

Postby cheerleader » Wed Dec 30, 2009 11:35 am

patientx wrote:Makes you long for the old days, when it was more about sharing information related to MS.


Dude...there's like 25 other forums for that....don't come down here if it bugs you so much :wink:
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Postby msh » Wed Dec 30, 2009 11:59 am

thanks, I agree.
You can search literature for info. This thread was more about the activism related to CCSVI and the current situation.
There is no time to lose and no method of accomplishing a goal should be discounted.
I am only saying group together and picket for coverage. No problem with that.
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Re: why wait? Picket now.

Postby patientx » Wed Dec 30, 2009 12:04 pm

cheerleader wrote:
patientx wrote:Makes you long for the old days, when it was more about sharing information related to MS.


Dude...there's like 25 other forums for that....don't come down here if it bugs you so much :wink:
cheer


It doesn't bother me that much; I just don't understand why you guys feed into this stuff.

I'll leave you to your conspiracy theories about evil neurologists and drug companies, and your plans to march on Washington and picket hospitals and news organizations, because you're being denied a proven cure for MS. But don't you already have a Facebook page for that?
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Postby Mechanicallyinclined » Wed Dec 30, 2009 12:09 pm

I don't think protesting is going to help drastically. In Canada anyway, the media did a fabulous job of bringing CCSVI to the public's attention.
I take offence to the thought that eveyone is talking and not doing anything. I put together a presentation to provide to the University of Manitoba and the St Boniface Research foundation. I'm please to say the response I got back was positive. This is one response I got.
Thank you for your letter and your information concerning the latest advances in the field of MS and cardiovascular disease. We are aware of the progress made recently and are watching the field with keen interest. At present, we have no projects in this specific area but there are researchers here at St Boniface Hospital who focus on the molecular basis of MS. We also have a large group investigating the molecular basis of cardiovascular disease. They may be interested in collaborative work on this topic. I shall forward your message on to them.

I got a reply from the Head of Research there also stating he found this interesting and would forward my information on to the relevent departments.
We have to understand this just doesn't happen over night. If in another forum there are more things happening then fabulous!
I thiink people are working hard to get the word out. I myself have to educate myself on all of this so I come across to the researchers somewhat inteligently. My thoughts are that when preliminary results get released from any of the research that is starting or underway, there will be interest and you will see it in the news. Then hopefully we see the snowball effect.
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Postby dunkempt » Wed Dec 30, 2009 12:39 pm

MechanicallyInclined -

I’m in Winnipeg too.

Did you run across news about the annual vascular symposium here? The convention centre will be full of interventional radiologists from across Canada...

http://www.umanitoba.ca/faculties/medic ... index.html

Obviously they already have their program, and I don't have any particularly bright ideas right now about how to take advantage of this, but I think these are the people we want.

Maybe we could volunteer to help at the hospitality suite...

-d
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Postby cheerleader » Wed Dec 30, 2009 12:39 pm

Whoa.....
I'm not a conspiracy theorist, px...Facebook page is an organizing tool for finding geographical testing sites, sharing information and keeping this on the front burner. It's also a place to disseminate information, and yes, the media is following it, too. I know I'm not doing any of this for you, patientx...and I'm OK with that. I just don't understand why you come down here to post (and potentially raise your cortisol levels) 8O
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http://ccsviinms.blogspot.com
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