NMSS CCSVI Grant Awards to Be Announced This Afternoon

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

Postby AMcG » Fri Jun 11, 2010 4:48 pm

Another quote from Stellar Wollinski

"Using a comprehensive approach, this team will first attempt to replicate the ultrasound methods used by Dr. Zamboni in 100 people with all major clinical types of MS, compared with 175 people in various non-MS control groups."

How vague can you get? Merely says "an attempt will be made..." so just an attempt is enough? Then no real details of what is to be done? How did this get approval?

To quote Yosser Hughes "I could do that."

I really expect stellar results from this.
Last edited by AMcG on Fri Jun 11, 2010 4:53 pm, edited 1 time in total.
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Postby concerned » Fri Jun 11, 2010 4:53 pm

What's wrong with trying to replicate results? That's how science works.
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Postby Lyon » Fri Jun 11, 2010 5:32 pm

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Last edited by Lyon on Sun Nov 20, 2011 8:26 pm, edited 1 time in total.
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Postby ozarkcanoer » Fri Jun 11, 2010 5:55 pm

The $2.5 million given to all 7 research groups is less than half of the money needed for BNAC to complete their CCSVI research, that will cost about 5 million dollars. We need to support BNAC.

Plus I hope we still have Drs Dake and Sclafani covering the research from the aspect of the safety and efficacy of the Liberation procedure itself. I do not know where these two fine doctors will get any money. We need to figure out how to get them the funds.

Plus we have Dr Simka continuing with CCSVI liberations. I hope he is keeping good records and plans to publish his results.

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Postby concerned » Fri Jun 11, 2010 6:07 pm

ozarkcanoer wrote:The $2.5 million given to all 7 research groups is less than half of the money needed for BNAC to complete their CCSVI research, that will cost about 5 million dollars. We need to support BNAC.

Plus I hope we still have Drs Dake and Sclafani covering the research from the aspect of the safety and efficacy of the Liberation procedure itself. I do not know where these two fine doctors will get any money. We need to figure out how to get them the funds.

Plus we have Dr Simka continuing with CCSVI liberations. I hope he is keeping good records and plans to publish his results.

ozarkcanoer


Why is the study costing $5 million? Isn't this a common procedure with standard medical equipment? what's all the money for?
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Postby bestadmom » Fri Jun 11, 2010 6:46 pm

I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.

He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it.

Needless to say, I was fuming but bit my tongue.
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Bias Toward Ignorance

Postby Shayk » Fri Jun 11, 2010 7:27 pm

Bestadmom
the head NMSS neuro......the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it.

I appreciate his honesty. Generally when funding research you fund people with some knowledge of the disorder in question (CCSVI). They clearly chose not to do this--assuming of course people with knowledge of CCSVI did apply, but since they won't tell us, I think it's a safe assumption.
Needless to say, I was fuming but bit my tongue

Good for you, I must say I'm beyond fuming and tears.

OC--indeed, we need to fund researchers who are interested in the well being of people with MS.

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Postby JCB » Fri Jun 11, 2010 8:19 pm

This right from their web page

http://www.nationalmssociety.org/about- ... index.aspx
"The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.

We help each person address the challenges of living with MS through our 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

-We are moving research forward by relentlessly pursuing prevention, treatment and cure.
-We are moving to reach out and respond to individuals, families and communities living with multiple sclerosis.
-We are moving politicians and legislation to champion the needs of people with MS through activism, advocacy and influence.
-We are moving to mobilize the millions of people who want to do something about MS now. "


I think they need a new purpose statement. I hope they ask me for ideas. They also need to address their "Core Values",

http://www.nationalmssociety.org/about- ... index.aspx

If you are going to put this stuff out there you better live it.
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Postby cheerleader » Fri Jun 11, 2010 8:35 pm

So--no money for Haacke, Dake, or BNAC (yes, they applied). OK. Research money for the NMSS advisory panel members who will "disprove Dr. Zamboni's research", according to Dr. Miller's comment to Bestadmom. Well, it's good to know where this stands. We'll just have to fund the doctors who have found CCSVI in patients another way. And that's OK. It's actually good to have a definitive answer. No more gray area.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby BELOU » Fri Jun 11, 2010 8:56 pm

I am so disapointed to ear all this :(

Why would we spend millions of research dollars to redo what has already been done by Simka, Sinan and Mcdonald? Is there anyone that can explain me why it took 3 months to Sinan in Kuwait to see if CCSVI was present in MS patient and we have to wait 2 $/?/ing years to see exactly the same results? I really thought that some of the money would have been given to actually treat CCSVI not to find it.

I have MS, and yes I've been tested positive with CCSVI. I told my wife, give us 6 months and treatment will be available here. Unfortunately I was wrong, not before many years... MSS was right when they said 5 to 10 years.

I like Simka, he seems to be a nice dude, but I want to be treated in Canada.

Calisse de tabarnak que je suis écoeuré de tout ça! (French sentence impossible to translate, french canadians will understand)
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Postby concerned » Fri Jun 11, 2010 8:57 pm

Well, I think the first function of science would be to try and disprove the theory, so you don't go expanding on a theory which might turn out to be false. A whole lot of science involves negative critique and questioning and that's how we weed out fallacies.
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Postby JCB » Fri Jun 11, 2010 9:01 pm

So when all of these IRB's start getting approved, and patients can actually be seen, where will that leave the NMSS? I can't believe they are that short sighted. We know they are not supportive of Haacke, Dake or BNAC, what are they supportive of walks and bike rides? I'm ready to join or start a new society.
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Postby AlmostClever » Fri Jun 11, 2010 9:10 pm

About UT/Wolinsky:

He did attend the ECTRIMS (and the Charcot meetings in Portugal) where Zamboni and Zivadinov first presented CCSVI in abstract form. Also, he was invited by Doc Ziv to be a visiting professor in Buffalo in the Spring of this year and has been following this rapidly evolving information.

He was no longer taking new patients when I started going to UT-Houston but my neuro works alongside him daily and I have spoken to him a few times. He has also been caring enough to advise on my case as well (which I first thought might be Devic's...he assured me it was not!)

On one visit (pre-CCSVI), I presented the positive results of a friend who went throgh the Hi-Cy treatment at Johns Hopkins to my neuro. She and Wolinsky met in person with my friend's doctor who was at UT-SW (he had relocated from John Hopkins) to discuss my candidacy for the procedure. They determined the Hi-Cy was not right for me and I am thankful, as my friend has experienced some minor setbacks (anecdotal, I know! I know another whohad the Hi-Cy and no benefit whatsoever!). All along, I never really thought the answer was there...

Since then, in my CCSVI conversations with my neuro, she did present alot of questions about the pathology of the disease and the difficulty in addressing some of the vascular issues, but I think much of this has been addressed in the medical community since my last appointment. I am actually excited about my next appointment, as I know it will be more about CCSVI and less about what to do next! Who woulda thunkit?

I e-mailed my neuro to congratulate them on the NMSS grant/award.

She responded saying they will be looking to get about 500 MS'ers and some controls. She'll notify when enrollment begins. (Hopefully, it's before my Liberation date? - I'd like to contribute to science!) As previously mentioned, they will be working closely with their Stroke Department on this study.

It would be hard for me to label this group pro- or anti-CCSVI. I can label them Caring and Conservative.

I believe they have questions and are looking for answers! All in all, I just wanted to comment here and try to take away a little of the negative spin these docs have been getting...

As far as having someone who cares about MS'ers and the science, we couldn't get a better group! After all, would you rather have Freedman running this study?!?!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby BELOU » Fri Jun 11, 2010 9:12 pm

Go MSS! Take your time... We are not in a hurry here. I give you up to 50 years to prove all that CCSVI shit. But by the way, as soon as IRB approvals will begin everywhere, people will naturally seek treatments instead of waiting for you.

I hope the oil splill crisis will be resolved before the MSS do an intelligent move because we risk to fill all oceans with oil...
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Re: .

Postby dlb » Fri Jun 11, 2010 10:03 pm

BELOU wrote:Go MSS! Take your time... We are not in a hurry here. I give you up to 50 years to prove all that CCSVI shit. But by the way, as soon as IRB approvals will begin everywhere, people will naturally seek treatments instead of waiting for you.

I hope the oil splill crisis will be resolved before the MSS do an intelligent move because we risk to fill all oceans with oil...


I'm at a loss regarding this interesting analogy ..... neither seem to be happening anytime soon & both are a sad state of affairs!
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