This Is MS Multiple Sclerosis Community: Knowledge & Support

The Multiple Sclerosis Society (of the USA?) posted this video on youtube earlier..

http://www.youtube.com/watch?v=kZrcfodTKZc

This forum gets a mention..

But strange that Barb Farell is mentioned but only half the story so far told.

...also interesting to note that 8 minutes in they have a nice, cheerful voice over woman reading one of my posts from here..and you can see it's TIMS and cheerleader. It was the one conciliatory comment I made regarding the NMSS research money given out this summer. But they didn't have the nice lady read my other sentences, where I ranted that the money was given to insider neurologists rather than vascular doctors.

And they didn't do the follow up on Barb--who is now off the life support wing, and doing physio therapy. Her doctors can't believe her progress.

It is a partial story, edited to make patients and caretakers look like crazed internet groupies. Rather than underlining how venous insufficiency is being found round the world in thousands of pwMS BY ACTUAL DOCTORS --not only Dr. Zamboni. McDonald, Beelen, Sclafani, Dake, Haacke, Hubbard, Siskin, Vogl, Sinan, Haskal, Simka, Tornatore, Lee, Zivadinov, etc..the list grows daily.....these individuals are not bloggers. They are actual doctors who are documenting what they are finding. Sorry, NMMS...we know too much. And the vascular doctors are speaking out.

As we used to say in the olden days of tape----Stuff was left on the cutting room floor.
cheer (who does not sound like the nice voice-over lady)

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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

Why would they even bother?..The video came across amateur.. I questioned their participation. Now who's desperate?
Good laugh with your voice over..I've never heard you speak but would not have imagined the 'stepford' lilt..

"this video is private" - huh?

Wow! It wasn't private yesterday! I suppose you have to become 'friends' with the youtube channel now.. I might give that a miss. Seeing it once was enough for me.You know what, perhaps it's being edited to make it a little more up to date regarding Barb Farell.

A video parody of what they presented could be made but show the touch points that show neurologist comments, society president comments to interviewer, pro comments from Kuwait-Italy-Serbia-and people like Professors and Dr.s Haake, McDonald etc. I am sure we have some folks in our talent pool that can do us proud with a video.

You know, I thought that it was quite reasonable. I was expecting something a little more sceptical, imagining the Bochum trial would be brought up at any moment (it wasn't). I'd like the opportunity to rewatch it before I post this but, oh what a shame, I can't.

What I mean to say is that it could have been better, but it could have been worse.

I watched it yesterday, I'm surprised it's been made private now. I would've expected it to be one-sided but all in all not too bad a job. I didn't like that they found the most desperate quotes "Ready to be a human guinea pig" and another one along those lines. I see very little of that sort of talk, maybe I'm not hanging out at the right message boards? It seemed a misrepresentation of how these decisions to go get CCSVI treatment are actually being made. Using Barb Farrell's story and image to convey the 'desperation' of patients, without following it up to show what happens when action is taken and her health improvements following venoplasty, is a bit much. One thing caught me by surprise: there was a statement that the MS Society recommended against patients getting treatment (back in Nov 09) but then did the MS Society soften that stance a few months later? That is how their youtube video made it out to be, but I would have liked to see that softened stance be what was presented to Dr. Sclafani's irb instead of the cold hard original stance. Thanks L for sharing this with us.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition