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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.
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.
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.
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
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.
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!
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.
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-
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.
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.