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No one will listen

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

No one will listen

Postby SandyK » Fri Dec 11, 2009 3:11 pm

I have sent emails to all of my local news stations in WA and local universities about CCSVI and I haven't received one response. I'm starting to feel like I'm in the middle of a conspiracy. I will send another round of emails and then it's on to phone calls!
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Postby ozarkcanoer » Fri Dec 11, 2009 3:19 pm

SandyK... Thanks for all your efforts. It's very hard when people don't respond. I know. I have been contacting people in St Louis for weeks now. I think doctors and researchers don't know yet what to make of CCSVI. Perhaps you could talk to your PCP or MS neurologist, or any academics who you may know. Perhaps you could contact someone in the media. Always contact people armed with Zamboni's scientific papers. Here is a link that may help you with that :

http://csvi-ms.net/en/content/publications-venous-multiple-sclerosis

Good luck,

ozarkcanoer[/b]
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Postby CureIous » Fri Dec 11, 2009 3:26 pm

Good efforts all around. They'll be beating down the door soon enough. There's no bleeds/leads tie in here, just (mostly) good news and that just doesn't sell much. They can't tout as "cure" or even "possible cure" just a treatment at this point, as I'm sure their lawyers have made them well awares. Considering how little coverage any other "groundbreaking" MS treatments got, this is not surprising. Plus news people are inherently uneducated when it comes to these matters, so unlike Avis doing her in depth approach, the best we can hope for right now is medical reporters, those doctors that do pieces. Heck look how many pieces are just reprints of AP news, nothing original unless it has a scandal attached.

And don't forget that like most organizations, hand written letters are the holy grail. No guarantees of course, but worth a shot.

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 Johnnymac » Sat Dec 12, 2009 7:38 pm

Hi Sandy, I definitely understand your frustration. If I've sent out one email I've sent out a dozen to various doctors around the Dallas Ft Worth area trying to bring as much attention as I can to this. Everything from Neuro and Interventional Radiologists, Neurologists, Vascular Surgeons, TV stations, radio stations, etc.

The only replys I've had are from UTSW and I've heard from multiple people there which is promising. I know they are getting inundated with emails/calls and am really hoping they have some clinical studies/trials of their own planned.

Regardless of if you hear back from anyone, just remember that you ARE doing something and I guarantee that even if they aren't responding they are reading them. If they aren't reading them its because they are getting so many that they just cant (in which case we're accomplishing what we want in forcing the issue). Keep up the efforts, you're doing everyone with MS and their families a great service by helping get the word out. In this political and money driven world the patients and families HAVE to speak up and speak up loud if they want to be taken seriously.

Bravo!
-John
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Postby Vhoenecke » Sun Dec 13, 2009 3:59 pm

We need to be truly thankful for the WWW. If this was 30 years ago there would be no mention of CCSVI. Now look at us.
We are strong in voting numbers.
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Postby thornyrose76 » Mon Dec 14, 2009 2:12 pm

60m@cbsnews.com- 60 minutes- write them! Everyone!
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Postby SandyK » Mon Dec 14, 2009 3:25 pm

I just wrote to 60 minutes. I'm gonna look into Dateline and some others, as well.
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Postby bestadmom » Mon Dec 14, 2009 3:36 pm

I emailed every national network news show weeks ago.

I don't know if it had an impact, but CBS national nightly news will have something on this week - Joan posted that. And Magoo posted that something will be on every network this week.
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Postby bestadmom » Mon Dec 14, 2009 3:44 pm

I emailed every national network news show weeks ago.

I don't know if it had an impact, but CBS national nightly news will have something on this week - Joan posted that. And Magoo posted that something will be on every network this week.
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Postby CNClear » Mon Dec 14, 2009 4:25 pm

What about "The Doctors" (relatively new show on in the afternoon) they are always saying they want to know about stuff like this...or Dr. Oz?

The only thing that worries me about getting the word out is that is the reason Dake had to stop doing the procedures and start a study/trial...because so many people took it to their neuros, and other forms of publicity, made the Stanford neuros lose it, freak out and complain, vehemently, to the Stanford Administration that when this CCSVI thing was found to be nothing, then Stanford's reputation would be sullied and so, grants, donations, etc would be withheld...Dake, actually, used the words, "I'm under siege" from the Neurology Dept. because this started getting so much publicity he could no longer 'fly under the radar.'

Then again, you can't put the genie back in the bottle....

Lisa (aka CNClear)
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Postby Needled » Mon Dec 14, 2009 5:11 pm

I emailed the Dr. Oz website a couple months ago suggesting CCSVI for a segment. No reply...
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Postby Bear2 » Mon Dec 14, 2009 5:18 pm

Then again, you can't put the genie back in the bottle....


This reminds me of Ron White from the "Blue Collar Comedy tour"

:D

Jim
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Postby jay123 » Mon Dec 14, 2009 5:25 pm

Don't forget to use the fact that Stone Phillips wife has ms when you email Dateline.
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Postby CNClear » Mon Dec 14, 2009 5:57 pm

Bear...

Ron White used to come to a small comedy club and we could go see him for $10 a show! One of my favorite RW lines is "...when I got stopped for a DUI, the arresting officer told me I had the right to remain silent...Too bad for me, I had the right, but not the ability..."

The genie line is also, from a Don Henley song...

RW and the genie line rings a bell, but I can't come up with the joke...(I used to be really good at telling jokes, but the brain fog defintely has put a damper on that...BUT I am looking forward to getting my joke telling, comedic timing back again, post stents...)

And, not to hijack this thread with jokes, but could you remind me of the RW/genie joke?

Thanks, after learning I could not get the stent surgery last week, at Stanford, I need a good laugh!

Lisa (CNClear)
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Postby ozarkcanoer » Thu Dec 17, 2009 7:23 pm

Someone is listening !! :D

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