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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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cheerleader
PostPosted: Thu Dec 17, 2009 6:45 pm 
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Folks who suffer from Multiple Sclerosis are not really a rowdy bunch. Activism and outrage are hard to muster for the chronically fatigued. But since Thanksgiving, people with MS and their loved ones have gone all ACT-UP 2.0.

That is, the past few weeks have seen a surge in online activity within the MS community - as bloggers, vloggers and forum posters are calling one another to action in response to the lack of response to what many perceive to the scientific breakthrough they've been waiting for.....

But still the mainstream press wasn't reporting the story. On ThisIsMS.com, an MS info-exchange, postings about CCSVI topped 16,000, (other treatment news numbers in the tens or hundreds.) In online forums, discussions turned to "where is the coverage on this?" "No one will listen" is the title of one long thread. A Facebook group called "MS Uprising" was born, a YouTube channel was born.


link

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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ozarkcanoer
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PostPosted: Thu Dec 17, 2009 6:52 pm 
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This is a good read, cheer. Nothing like something entertaining to make my evening a little merrier, LOLOL !! It's too bad the author alluded to the one death. That is a meme that doesn't want to die a deserved death.

ozarkcanoer
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SandyK
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PostPosted: Thu Dec 17, 2009 7:12 pm 
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This at least makes me feel less alone. I was feeling like a whacko with conspiracy talk to my friends.
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CureIous
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PostPosted: Thu Dec 17, 2009 7:32 pm 
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Well the Huffington Post is only read by a couple million or three, and used as a reference on TV media. Oh wait WOW lol.

Someone turn on the porch light, guests are coming!

:) Thanks Cheer for getting this out there in short order.

Mark.

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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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bestadmom
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PostPosted: Thu Dec 17, 2009 8:01 pm 
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Great article, despite her mentioning Holly and Radeck's migrating stent. It's spot-on about our internet phenomena, and is supportive of the overall tone of "revolution" against the neuros, big pharma and the MS societies. I'm excited that they broke it on the web and hope it pushes CBS to finish editing and air the CCSVI segment.

Michelle
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jay123
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PostPosted: Thu Dec 17, 2009 9:14 pm 
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Joan - anything new on the CBS story?

A side story too as you mention Holly - when I went to the MS Society web page today to read about their grants a survey popped up asking what I thought of their site! I gave them totally negative reports and mentioned them spreading the lie that someone died having the procedure!
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patientx
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PostPosted: Fri Dec 18, 2009 7:55 am 
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Great article, despite her mentioning Holly and Radeck's migrating stent.


Why - you're not supposed to tell both sides of a story?
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bestadmom
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PostPosted: Fri Dec 18, 2009 8:05 am 
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I think telling both sides of the story is fine, but the Holly part is questionable. It was presented fairly, that her death occurred after the procedere, but that intimates that it was a result of the surgery, and I personally don't believe it was. As far as Radeck's migrating stent, there is no doubt that it was a direct result and a very serious risk.
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Lyon
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PostPosted: Fri Dec 18, 2009 9:47 am 
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Last edited by Lyon on Tue Nov 22, 2011 3:21 pm, edited 1 time in total.

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bohemianbill
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PostPosted: Fri Dec 18, 2009 10:11 pm 
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Cheer thanks for the post, it needs to be mainstreamed, or CCSVI will become a mere rush of wind in a very dark forest.

If We do not do all we can, as care givers, sufferers, supporters of all things CCSVI. If we do not demand Total Transparency and accountability of those that claim to be our voices than how will ever know if this was the real thing. Second rate funding equates to second rate research. I say not on our watch.

Demand the Societies to open their purse strings and support CCSVI research or redirect your support to those that are-ITS THAT SIMPLE-

And its the Society's Choice.

-keep the heat to the feet-

BB
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Renoandi
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PostPosted: Tue Dec 22, 2009 12:13 am 
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This was a great article and I am proud to say when you click the link a youtube channel was born it brings up my MS Vlog Support channel.

CCSVI has been a hot topic amoung all the MS vloggers and we even made it on the air when CTV did their follow up stories.

We are a strong community us MS'ers and we will have our voices be heard.

Andrea

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www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.
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Shannon
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PostPosted: Tue Dec 22, 2009 4:44 am 
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"The Stanford program was swiftly halted."

This is the part that I have trouble with. Dr. Dake has stated that he was ready to pursue the clinical study avenue for some time, and took this as an opportunity to halt the individual procedures that he was accepting and going into the clinical study phase of his research on this. This makes it sound as if there was a reprimand delivered due to the experience of the two patients. I think that all sides should be represented fairly, therefore more information should have been pursued by the author to find out what prompted them to change course. The statement causes one to presume wrongdoing where there was none. As far as I know, no patient has brought charges of wrongdoing.
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RedSonja
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PostPosted: Fri Jan 15, 2010 7:43 am 
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Sorry folks, I am a sceptic in this as everything else. Being in The Huffington Post puts CCSVI in the snake oil category. Not good at all.

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kenneb9
 Post subject: Huffington Post
PostPosted: Fri Jan 15, 2010 12:21 pm 
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It was the Huff Post article that I read that led me to this site. In the mean time we got in the que at Stanford, because of this site I realized that was going to take months. So we went to a local vascular surgeon who is giving us the mri, mrv, doppler utltrasound on Jan 25th. And he will perform surgery soon after the results. So Huffington has helped.
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annad
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PostPosted: Fri Jan 15, 2010 5:19 pm 
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One of my favourite articles!
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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