NMSS IS FUNDING STUDY PROPOSALS

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

NMSS IS FUNDING STUDY PROPOSALS

Postby mrsilkykat » Wed Dec 16, 2009 4:47 pm

NMSS sent emails today or yesterday to neurologists and researchers asking for study proposals for CCSVI.

Those of you who are in touch with radiologists, etc. who might not be on the NMSS email list, have them get in touch with NMSS immediately.

NMSS is on board with money!

That's all I know. I didn't ask my neuro for a copy of the email.
Kat
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Postby ozarkcanoer » Wed Dec 16, 2009 5:08 pm

Hi mrsilkycat, Thanks for more good news. I don't think neurologists can do a whole lot with CCSVI without radiologists and other researchers who understand the vascular system. I know that I have been in contact with neurological researchers and they don't know what to make of CCSVI ! It will be interesting to see what kind of research the NMSS will fund. I know that the Buffalo study needs funding.

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Postby Loobie » Wed Dec 16, 2009 5:24 pm

While this is good news, it's only in chunks of 100 grand, not enough to hardly get started, so it's token now, but still a 180 degree turn from their blurb a couple weeks ago.
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Postby Lyon » Wed Dec 16, 2009 5:33 pm

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Last edited by Lyon on Tue Nov 22, 2011 2:21 pm, edited 1 time in total.
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Postby 10yearsandstillkicken » Wed Dec 16, 2009 10:38 pm

This http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206 is the notice. Yet again, there is reference to a death
surgery be performed only as part of controlled trials, especially since there have been anecdotal reports of surgical attempts to treat CCSVI in people with MS resulting in adverse events, including one reported death.

It would be nice if they would qualify the statment with the conclusion that it was not due to the treatment. I also like the
anecdotal reports of surgical attempts to treat CCSVI
as if Dr. Dake was just playing around with surgery. I guess this is better than NMSS ignoring CCSVI.
Chuck
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Postby CureIous » Wed Dec 16, 2009 11:27 pm

Here kitty kitty....
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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Postby Johnson » Thu Dec 17, 2009 12:35 am

It's great that they are not so truculent as before, but what is with the neuro invite to look into vascular issues? Maybe I ought to tell my podiatrist friend to get his foot in the door too.
My name is not really Johnson. MSed up since 1993
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Postby bestadmom » Thu Dec 17, 2009 4:53 am

Johnson, I love your foot in the door comment.

If the NMSS solicited neurologists, and they don't get any requests for funding, they can say they did their part and nothing came of it. They need to step up or step aside.
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Postby Johnson » Thu Dec 17, 2009 4:31 pm

bestadmom wrote:Johnson, I love your foot in the door comment.

If the NMSS solicited neurologists, and they don't get any requests for funding, they can say they did their part and nothing came of it. They need to step up or step aside.


Thanks bestadmom, for getting a kick out of that. Snicker

Step up or... indeed. Snicker again.

They seem to be a bit more interested at UBC and Saskatoon now, and are going multi-disciplinary, which is the only sensible route. But still, it seems as if everyone is still turning to neurology in reflex - a Semmelweis Reflex.

Here is the map that I see as the most practical;

GP refers to radiology to diagnose stenosis in veins, possible reflux ->

Stenosis determined, GP refers to vascular guy, who opens veins->

Symptoms completely resolved. Praise whomever! Hallelujah! Thank you! ->

Remaining neurological issues, GP refers to neurologist. ->

Then, iron chelation. Physical/speech therapy. Fund raising. Return to the world of others.

I think that we have to choose to step out, and dance around, or kick the legs out from under whomever is in the way.

I don't know much about the official MS Societies, as I never had any use for, or interest in them. They seem to be counter-productive in a lot of jurisdictions. I say forget about them. The most crushing thing that society can do, is to shun. Sociopaths become invisible and silent. Just try it on your dog when it misbehaves. Completely ignore it as if it was not really there, and its behaviour will change.

We are the real MS society.

/prattle
My name is not really Johnson. MSed up since 1993
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Postby bestadmom » Thu Dec 17, 2009 8:31 pm

Johnson,

No kicking, dancing or stepping for me. I can roll over them, and I can roll around them too.

We will have a CCSVI.org, I promise. There will be no more MS and no MS Society.
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