CBS News

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

Postby HopingHusband » Wed Dec 23, 2009 9:36 pm

We have to do our own thing, but collaborate together for everyone's sake.

In the past, we have been knocking and pounding on the door to open....now Zamboni has reached over and unlocked the door for the world....to run through with all of our expertise and to act as one, which is key.
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Postby jay123 » Thu Dec 24, 2009 7:27 am

I've got my dvr set up to tape it every night now just in case.
Joan - did the producer say anything more to you about getting it on 60 minutes? I know there was discussion that it seemed like too much info for the 2-3 minutes they get for a story on the evening news.
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So I haven't missed it?

Postby girlgeek33 » Sat Dec 26, 2009 7:18 am

Hopefully if we don't catch it on live it will be one of the news spots that they post video online... Any updates are appreciated if anyone knows...

Thanks,
Denise
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Postby CRHInv » Thu Dec 31, 2009 7:13 am

Cheer, anyone, any more information? I am so excited for this. This would be a great way to start the new year!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby cheerleader » Thu Dec 31, 2009 10:36 am

Sorry guys....the producer said she'd e-mail me as soon as she knew...and I got nothing here. My paranoid side says corporate sponsors...my optimistic side says, bigger story. We'll see. I'll post as soon as I know.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Out2l8 » Thu Dec 31, 2009 10:59 am

I just think that it's delayed simply because of the holidays. Pretty much every TV news outlet is operating with minimal staff. CBS isn't going to break a big story unless all of their colleagues are watching!! And so that CBS can rub it in!

You rock cheer!!

Happy New Year!
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Postby CureIous » Thu Dec 31, 2009 11:08 am

Out2l8 wrote:I just think that it's delayed simply because of the holidays. Pretty much every TV news outlet is operating with minimal staff. CBS isn't going to break a big story unless all of their colleagues are watching!! And so that CBS can rub it in!

You rock cheer!!

Happy New Year!


That was my thinking, no use putting it on at the bottom of the season when everyone is busy doing holiday stuff. But oh boy that would be a great way to ring in the New Year! I think it's EASILY a 60 Minutes piece, those are only 20 minutes or so anyways, so they might be doing a 1-2 punch, an Evening News piece, and at the end of that, blurb for the 60 Minutes on Sunday. This is exactly the type of thing 60 Minutes does.

"It all started in Ferrara Italy, one persistent Doctor, and his stricken wife...." I can hear it now..

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 CRHInv » Thu Dec 31, 2009 12:37 pm

I'm going with Cheer's optimistic side thinking it is a bigger story. For goodness sake, especially those of us that have been through this know it is a HUGE story!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Re: CBS News

Postby prof8 » Thu Dec 31, 2009 2:41 pm

The emails I have received from my doctors at my city's medical school explicitly state that you cannot reproduce, copy, or pass on to anyone else. So I have never cut and paste anything they said verbatim. I try to be respectful even if I summarize info.


CureIous wrote:
judipom wrote:
cheerleader wrote:
thanks, Judi...
we'll see if it's finally going to be aired! I have an e-mail in to the producer, I'll see if she can verify the date.
best,
cheer


Dr. M-W said: "Ms. Sheila MacVicar spoke to me by phone as part of her research." If that name is useful for finding out exact time. Also, what are the rules regarding posting an email from a 3rd party? Do I need to get permission? I don't have a telley (by choice) so I'll have to catch the news on youtube or something. Judi


Hi Judi do you mean rules for the site or laws or what? I would be very wary to post private communications without the senders okay, any more than I would post the entire contents of a phone conversation I had with someone in private. Goes to the whole "expectation of privacy" thing, at least in personal non-work related emails. My jaw hangs down with some of the stuff I see on here sometimes. The internet has turned into the Wild West, just let it all hang out, names, addresses, phone numbers, email addresses, what I wear on Thursdays lol.

So legal wise, haven't the foggiest, but I always try to think what the other person would want, and if not sure, ask them.

I'm sure (about the tv stuff) that it will be online in a short amount of time, though YouTube has some pretty good filters on there now for tags especially, but the CBS site might have it up just like it was up on W5 which was way cool.

Mark.
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Postby fogdweller » Fri Jan 01, 2010 10:09 am

There is one thing that news companies hate worse than getting scooped, and that is putting a big story out there and being wrong. Even after Fox news, as hard as it may be to believe, credibility is still important. With all the new studies being done, and all the new information, they will soon know a lot more for sure, so are probably waiting for a level of certainty.

We also need to remember that no how huge and important it is to us MSers, to the world at large the CCSVI news is not such a big deal. I am always amazed at how may people I run into that don't even know what MS is. There are actually few enough of us that drugs for MS are still classified as orphan drugs ... not so universally important that drug companies would even pursue them if they didn't get special incentives.

And don't forget, the hero of this story is not an American at this point, but a foreigner.

So if the story isn't certain, if the hero is a foreigner (Zamboni) and it is less universally important than, say an airport bomber, then it isn't going to make the news until there is a dead spot they need to fill.

So it is up to us to spread the news.
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Postby chrishasms » Fri Jan 01, 2010 11:42 am

I can tell you from experience...DO NOT POST EMAILS VERBATIM from any medical person.

I had Revimmune in 08 and I have a large list of doctors I talk with regularly from Neurologists, oncologists, GP, Cardiologists, and a couple of natural doctors too, who followed my website and my progress.

I can email these people any day of the week and they will give me any answer I want but the stipulation from all of them are the same: "Don't use me name or you will never here from me again. I don't need to be drummed out of my profession."

So back in the days when I used to post useful info on here I would use a generalized term such as, "A doctor I know said..."

And I crawl back into the woodwork....
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Postby whyRwehere » Fri Jan 01, 2010 1:28 pm

It is true that it is not a big story to everyone in the world, but a lot of people will know someone with MS, if they aren't related to someone with it. The story is great on its own, regardless. I can't wait to see it on CBS, when it happens, then there will be the film and Jeff will do the music....Joan who do you want to play you?
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Postby Sawdoggie » Wed Jan 06, 2010 9:03 am

The number of people that I who know someone else who has MS has amazed me since by diagnosis. Before my diagnosis, personally I knew one person but since I have learned of at least a dozen cases within a degree or two separation from me. This story when it airs isn't just for the 400k or so in the US that have MS, but also the millions of people that it affects indirectly.
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