Best ways to bring attention to this?

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

Best ways to bring attention to this?

Postby Johnnymac » Thu Dec 03, 2009 5:01 pm

With relatively low to non-existent media coverage here in the US regarding CCSVI I'm curious what suggestions you all have as to how we can help get the message out about these findings. The more attention it gets (hopefully positive attention) perhaps the faster things will move along.

Personally I've emailed local politicians asking for their support, same with Michelle Obama. I've emailed local news stations with links to information. Am also working with a good friend who works for the local Dallas NPR radio station on lining up a story. After talking with him today he has already approached the medical investigative reporter for the station and they are both reviewing a series of links and study documents regarding CCSVI. Luckily my friend at KERA here in Dallas is also good friends with my wife and he would do anything that could potentially help her fight this MS monster.

Perhaps this is all unnecessary and I should just let things take their natural paths but I feel compelled to reach out to anyone and everyone I can to at least say..."You really should take a look a this and see what you think"
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Postby ozarkcanoer » Thu Dec 03, 2009 5:07 pm

Johnnymac, Everything that you are doing is good. Tell everyone you know. Mail a link to the documentary to everyone you know who has MS. Talk to the media. Talk to your doctors. Everything you are doing is necessary. Thank you for what you have already done !!

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Postby Johnson » Thu Dec 03, 2009 5:41 pm


I agree with ozarkcanoer (my sight is bad lately, and I kept seeing that as ozarkcancer - it was freaking me out!).

I wrote on another post (redacted)
I have been thinking a lot of those who can't afford to do it. The cost is brutal in the US. My cognitive functions have taken a pounding the last few of years (actually, the last 16), but my hope is to regain a lot of that, have some energy, and start thinking of some kind of trust fund(raising) for those who cannot afford it. I always think that there has to be "a reason" behind things - including (me) having MS, and nobody should not have treatment because they don't have money (or credit).
Fund raisers could attract a lot of attention. Write to Montel Williams - he has been devastated by MS.

I am tentatively seeing Dr. Simka in February, and if I come back cured, I will be shouting from the roof tops.

I do have some connections in media (CBC), and will be making noise there. CBC is already on it, and it is in the media here, but my useless doctor hadn't heard of it. When I told him on Monday (and presented him with all the info to be had), he dismissed me, my MS, my venous insufficiency in my legs, and told me that this would ne front-page news if it was real. I told him that it was front page on the Globe and Mail (a national, respected newspaper), and many other places as well. I aked him if he had not any curiosity, and he just looked at me stupidly. I fired him on the spot.

Unfortunately, the competition in the media is war, economy, Tiger Williams, and the latest bimbo du jour. Those who have felt such relief after the treatment could present themselves to Oprah, and all the others. Get the women's eyeballs, and we will get some action (women being the ones that really make this world of ours work...)

By the way, your wife is very beautiful. I was going to write so yesterday, but thought that it must be from an album cover, or magazine. Grin
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Postby tzootsi » Thu Dec 03, 2009 5:47 pm

I e-mailed the New York Times a few days ago - never heard back. Perhaps we should try the Associated Press, UPI & Reuters?
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