This Is MS Multiple Sclerosis Community: Knowledge & Support

I don't think anyone else has mentioned this (or I missed it), but here is a story that the CBC (finally) did that talks about MS, CCSVI and Zamboni. It also includes an interview with a (clearly uncomfortable) official from the Canadian MS Society who says that Zamboni only published his first paper about CCSVI in November and that the MS Society was first off the mark with funding for CCSVI research. You'd think she would have at least found out when his papers about CCSVI were published - she probably didn't bother reading any of them, I suppose. She also didn't mention that the MS Society moved to offer a small research fund only after it started to feel the anger of Canadian MSers.

http://www.cbc.ca/connect/2010/02/new-ms-research-1.html

...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

I don't know...CCSVI is so different from the prevailing model that I can understand the initial heck-no reaction. Some people are better at change than others.

It is a bad sign that, from the sound of it, she still has not read up on it much. The paper published in November was the first endovascular treatment trial, right? Definitely not the first paper at all.

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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

Cece, according to the research sticky, Zamboni first postulated the idea of CCSVI in 2006, and the first doppler tests were reported in 2007, so there were definitely published results for her to look at before November of 2009.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Hi There,

Over-all I thought it was a good show, I especially liked the uninformed MS Society spokesperson do a lot of squirming in the seat, lol.

But did you catch the commentator say that Dr. Zamboni had found Clogged Veins? And that his Procedure Unclogged those veins?

I think he’s confused with plaque or cholesterol or something anyone else catch that?

Lora

Yes, she was great...

She said no one had heard of Zamboni until November - other times the MS society has said they had been aware of it for some time.

She said the MS society was a leader in pursuing this research - other times they have said, quite clearly, that they were only putting out this (small) amount of research money because of the public clamour.

It was classic bullshit: it wasn't that she was lying or telling the truth. The truth didn't matter one way or the other. She didn't want to actually engage with the subject; she just wanted to say things that would make it *seem* they were taking CCSVI seriously enough - while trying to letting as much air out of it as possible.

But when it's that transparent it doesn't work. Every time the MS establishment talks like that more people start thinking about flying to Poland.

-d

Thx for the video...I can't be completely nuts to think that this will have a back story that could shock the public and cast a huge mis-trust in our medical support.
My 2 cents...I don't trust the current system of M.S. "support"

I can think of many reasons for urging MS sufferers to be cautious about investing all of their hopes in CCSVI and liberation treatments, but I can't see any reason why the MS Society didn't properly research the subject. Even if you assume that they just "missed the boat" with regard to knowing a darn thing about the theory and its associated research and clinical results until it was shoved in their faces in November, what's their excuse for not investigating it since then? What the h**l are they getting paid for? I can't see donating any more of my money to an organization like this.
...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

I agree...even to the part of donating. I had 50k in my will for them I just removed also. When I go...there are a few I would ask God to take another look at. lol

Said it once and will say it again, the media is both a blessing and a curse. Most aren't intelligent enough to pass high school, and the ones that are go on to bigger and better things like politics and such. That's why I don't get overly excited over all this media nonsense, because they say one sentence on one show at one time, and it relegates years of internet postings and medical research to obscurity.

So in my mind, when we want more media coverage, my only caveat would be "be careful what you ask for". Yes, it's good to elevate the idea, get it rolling off the tongue and bring it to the proverbial water cooler, but for scientific dissemination of a complex issue, boiled down to a 3 minute piece, forget it.

That's why I like Sammy's piece, forget all the "officialese", let's hear what one person who's been there done that and put her body on the line has to say about it. It's not enough to satisfy the scientific community, or even enough to get them to pay a second glance, but for JQ Public, "seeing is believing".

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

Firstly THANK YOU CBC the mother Corp of Canada which sucks 1 BILLION in fundind from Canadains to suppost your various views for FINALLY reporting the CCSVI story albeit erroneously[sp].

Watching the MS spokesperson, some lady by the name of April Royal, vice president of someting [boy, the MS Soc of Canada has a whole lot of Vice Presidents of this and that]
Our gal from MS suggests that this breaking news story was concievied in Nox 2009. WHERE the H@@l has the society been while all this was discussed since 2006??? Of course their research advisior and member of the Ottawa MS group is none other than out old friend Dr Mark Freedman, who has stated that the Zamboni theory is a "Hoax"

No wonder the MS spokesperson, APRIL, is skating on "THIN " ice. I would be too if I had that weight on my shoulders.

We for one are giving our donations to those who try to take action. To h##L with the cautios approach of the beuacracy of MS Soc.

Have a good eve.
Signed furious with MS Canada
Chuck 123.

Sorry for all the typo's in above post.
Signed still annoyed.
Chuck123