This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey everyone, i've been monitoring the forum for a while now but i've only now joined. I'm not dx'd yet wih MS but i think i will soon be. Am a 22 yr old male. I posted this story to cnn:

New hope/possible breakthrough for multiple sclerosis patients. Described by Dr. Paolo Zamboni in 2008. Big news in MS community as those treated for CCSVI have had a halt in their MS progression and a new lease on life. Under reported in U.S. but reported on in Canada: http://www.ctv.ca/servlet/ArticleNews/s ... ?s_name=W5

Link to all information:http://csvi-ms.net/en/content/introduction-venous-multiple-sclerosis

I got this automated reply:

Thank you for this submission. The Viewer Communications Management team reviews and summarizes story ideas, and distributes them to appropriate news divisions for consideration. If it is decided the story is something of interest that can be developed for on-air reporting, you may be contacted for more information.

Because of the volume of story suggestions we receive, we are unable to reply with information on whether or not it will be used.

Thank you again for sending it our way.

CNN Viewer Communications Management

Has anyone else tried to contact news organisations in the U.S.?

Cinder21,
I have sent letters to The NY Times science editor, Senator Debbie Stabenow of MIchigan ( reply, no action) and Dr. Oz. NO ONE has even responded with an automated reply.

Others have been mailing Oprah, newspapers etc and only Chapel Hill has responded (note thread). It is more than frustrating that we cannot get a BIG coverage of CCSVI.

I thought 60 Minutes was supposed to do a story this week,but have heard nothing more. Just don't get it.

Hmmm....seems like we're either getting swamped by other stories or MS is not as big an issue in the U.S. One of the reasons why it got covered in Canada is because its more prevalant there. Since MS'ers aren't the most active because of the disease and therefore can't really protest this in the streets, then i think cyber activism is the way to go. We're just gonna have to keep trying more creative ways of getting through to these media outlets. For my part i'm gonna keep bombarding these outlets with varied versions of my story on CCSVI. I think eventually one of us will get through. Please MS'ers don't give up. If you have to creat a draft and routinely send the same e-mail over and over to these outlets then do that. I'm confident we will get a breakthrough sometime during the corse of next year if we keep trying.

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI

Here are some links to the major news organisations where we all can give exposure to CCSVI:

- http://www.ireport.com/ir-topic-stories ... cId=147056

- http://abcnews.go.com/health

- americasnewsroom@foxnews.com

- Nightly@NBC.com

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI

Sounds like a good new activist for us, thanks everything sent out helps in some way!

One correction, the CBS story was for their nightly news, not 60 minutes - at least as of right now. They have so much info they were going to try for 60 minutes though, hopefully they will make it. It will be tough for them to get a lot in in the 2-3 minutes they get on the nightly news, but every bit helps.

Ciner
Thank you for the links!
Rose

You are all welcome but remember its for all of us. If i were you guys, i'd send the csvi-ms.net link which explains everything bout ccsvi and the link to the video of the interview with Dr.Zamboni done in canada. Both are below:

http://csvi-ms.net/en/content/introduct ... -sclerosis

http://www.ctv.ca/servlet/ArticleNews/s ... 1/20091121

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI

I sent an email to Meredith Vieira of the Today show. Her husband, Richard Cohen, has had MS for many years now.

She did a piece last March 2009 on Bioness medical equiopment for MSers. It was a decent piece. Good enough to get me to buy the devices.

I got a very nice form reply saying they'll get in touch if interested. Maybe a few more nudges would help.

Thats great mrsilkykat. This one sounds promising. All we need is one breakthrough in the mainstream media for this story to get out and hopefully other will follow.

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI

I just heard on the radio about an interesting organization:

http://www.propublica.org

From their "about us" site:

ProPublica is an independent, non-profit newsroom that produces investigative journalism in the public interest. Our work focuses exclusively on truly important stories, stories with “moral force.” We do this by producing journalism that shines a light on exploitation of the weak by the strong and on the failures of those with power to vindicate the trust placed in them.

Can somebody from the U.S. make contact to them?

Cheers

Cah

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Well we don't need to be living in the U.S. to contact them cause i just did. Here's their email:suggestions@propublica.org

We all can do our part.

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI

OK...e-mailed abc, whitehouse and oprah/ dr. oz....trying to do my part here for us that suffer and are not being heard....i suggest that everyone on this forum do the same...thre are way too many of us for this to be ignored...CCSVI--WOW! i am a believer--cold feet, warm hands..losing muscles and ability to walk...we do NOT have TIME!!!!

FIGHT FOR THE CAUSE--
CAMPATHER-NOW CCSVI??-WILL NOT GIVE UP!!!
LET'S DO THIS!!

LEETZ

Anyone had enough yet? I don't have MS (family and friends do) but I am sick of the lack of response in this country and the medical community.
Suggestion: picket-that will get instant media attention. Pick 10 cities across the US and come out in droves and stop traffic. Start with NY, at NYU home to hi powered MRIs and major researchers-midtown NYC is a prime spot and you are GUARANTEED coverage, I bet 60 minutes will pick it up from there. I did it once very effectively and ended up on page 7 of the NY Post (not in publication anymore).
Perhaps Meredith Veira's husband with MS would join in and she would cover it?
CCSVI is major medical news. Think of the money saved for generations to come if we diagnose and eliminate/lesson the symptoms? Not to mention the immediate benefit.
If enough people get fed up it will work.
michele RN

i live in upstate ny...anyone else????

Thankyou guys for contributing. I really hope there are many more doing the same.

msh: I don't want to encourage conspiracy theories but the drug companies do stand to loose much from this. It is possible that they may slow the process.

But I think we have the potential numbers for proper recognition through activism. I think many of us are in the same situation where we or people we know are in a downward spiral. Hence we need to get more research through exposure. Lets spread the word people. Success through numbers.

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22 yr old male located in the caribbean. Suffering with MS like symptoms from early 2008 with multiple relapses under my belt with optic neuritis. Not dx'd as yet however. Hope is to ultimately be tested for CCSVI