NMSS

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

NMSS

Postby Lyon » Tue Oct 06, 2009 4:06 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:54 am, edited 1 time in total.
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Postby Needled » Tue Oct 06, 2009 4:15 pm

Thanks, Bob. At least they're acknowledging it. I did find this part hopeful --
Q: Will the National MS Society fund research into CCSVI in MS?
A: The National MS Society welcomes research proposals from any qualified investigators whose research questions are relevant to multiple sclerosis. All proposals received are thoroughly evaluated for their relevance and excellence by our volunteer scientific peer review panels. At the present time, we have not been approached for funding any projects related to CCSVI. If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS, we would likely commit to fund such a study.
Emphasis added.
Anyone wanna write a proposal?
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Postby magoo » Tue Oct 06, 2009 4:25 pm

That is fantastic!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby radeck » Tue Oct 06, 2009 4:27 pm

Great! However the core sentence describing Zamboni et al.'s research results is highly inaccurate as far as I can tell:

"The investigators found significant evidence of slowed and obstructed drainage in the veins draining the brain in many of those with MS. They also found evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain."

1) the blood flow anomalies were found in ALL MS patients.

2) the reverse flux was observed in the IJV's themselves, not in the "substitute circles"/collaterals.
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Postby magoo » Tue Oct 06, 2009 4:32 pm

I still think it will give more credibility to CCSVI for those who look to the NMSS as "the source" of all MS info.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Sneaky » Tue Oct 06, 2009 4:42 pm

fantastic is right, glad to see it's starting to go mainstream!

Lyon, that was me btw, that pointed that out, heck I think it might have only been yesterday ... guess it goes to show how quickly things can change :D
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Postby CureIous » Tue Oct 06, 2009 5:00 pm

Sneaky wrote:fantastic is right, glad to see it's starting to go mainstream!

Lyon, that was me btw, that pointed that out, heck I think it might have only been yesterday ... guess it goes to show how quickly things can change :D


Looks like a "give in one hand take away in the other" to me.

Can't even begin to parse the doublespeak in this. "hey its already been looked at and dismissed people, move along, nothing to see here".

Not much more or less than what I expected. I wonder how many people with MS will search out CCSVI on the site, find this article, then toss the whole paradigm in the recycle bin without even checking it out.

Sorry, I can't get excited about "the official word" being so slanted and bereft of any copious research. Maybe they can replace a pharma ad with a stentee interview for one issue lol. "I tried stenting and it worked great for me, I'm x months with no relapse". That of course appears to be stretching into years for the zamboni study. Funny, didn't see that mentioned....

Not impressed at all.
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 fernando » Tue Oct 06, 2009 5:37 pm

You are absolutely right CureIous.

Note that they don't even say "don't get treated" they say "don't get tested". I presume they don't want problems with health insurance companies.

This is in their radar right now. This could be good or bad. Maybe I'm a little paranoid but I really worry about Dr. Dake, I imagine them saying "Hey, someone in Stanford is actually treating people, we must do something about that".
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Postby Sneaky » Tue Oct 06, 2009 5:45 pm

CureIous wrote:Looks like a "give in one hand take away in the other" to me.

Can't even begin to parse the doublespeak in this. "hey its already been looked at and dismissed people, move along, nothing to see here".

Not much more or less than what I expected. I wonder how many people with MS will search out CCSVI on the site, find this article, then toss the whole paradigm in the recycle bin without even checking it out.

Sorry, I can't get excited about "the official word" being so slanted and bereft of any copious research. Maybe they can replace a pharma ad with a stentee interview for one issue lol. "I tried stenting and it worked great for me, I'm x months with no relapse". That of course appears to be stretching into years for the zamboni study. Funny, didn't see that mentioned....

Not impressed at all.


I do agree that there is some double talk and it was a little frustrating of a read, but to me it reads more like they are leaving the door open to the possibilities. Personally I don't think they will be able to ignore the movement and much much more will come. Afterall, if things pan out with CCSVI they might have to rename the society.

Mike
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Postby CureIous » Tue Oct 06, 2009 5:46 pm

fernando wrote:You are absolutely right CureIous.

Note that they don't even say "don't get treated" they say "don't get tested". I presume they don't want problems with health insurance companies.

This is in their radar right now. This could be good or bad. Maybe I'm a little paranoid but I really worry about Dr. Dake, I imagine them saying "Hey, someone in Stanford is actually treating people, we must do something about that".


This is why, all misgivings about NMSS aside, we must continue with the ground up approach. At least present patients the information and let them decide. ALL the information not some of it, not 30 year old studies, the whole kit n' caboodle. I notice also there is no author noted on the article, probably SOP for them so who to respond to? lol. Shrug.

Yes, I am concerned also about Dr. D, albeit only slightly. Bigger the money pie, bigger the risk. Not much into conspiracy theories but still makes you wonder "what if". Only God can protect Him 24/7.

Anyways Cheer is on the right path, keep plugging away, keep writing calling asking questions etc etc. She can only do so much however so all of us little pieces need to make that puzzle clearer as more fall into place.

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
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Postby Lyon » Tue Oct 06, 2009 5:52 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:54 am, edited 1 time in total.
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Postby CureIous » Tue Oct 06, 2009 5:53 pm

Sneaky wrote:
CureIous wrote:Looks like a "give in one hand take away in the other" to me.

Can't even begin to parse the doublespeak in this. "hey its already been looked at and dismissed people, move along, nothing to see here".

Not much more or less than what I expected. I wonder how many people with MS will search out CCSVI on the site, find this article, then toss the whole paradigm in the recycle bin without even checking it out.

Sorry, I can't get excited about "the official word" being so slanted and bereft of any copious research. Maybe they can replace a pharma ad with a stentee interview for one issue lol. "I tried stenting and it worked great for me, I'm x months with no relapse". That of course appears to be stretching into years for the zamboni study. Funny, didn't see that mentioned....

Not impressed at all.


I do agree that there is some double talk and it was a little frustrating of a read, but to me it reads more like they are leaving the door open to the possibilities. Personally I don't think they will be able to ignore the movement and much much more will come. Afterall, if things pan out with CCSVI they might have to rename the society.

Mike



Yeah, I was kinda broad brushing their broad brushing lol. I try to envision things through the eyes of the 1st timer, the overall tone, the gist, etc etc. Yes, the scales tipped in our direction, ever so slightly, but, and this is a big but, imagine that you can impact say 35 people directly with your "message", whatever that message may be.

They just reached 100's of thousands in one click. Now imagine you have someone, who is maybe interested in checking things out, and the first thing they do is go there, read that article. Doesn't exactly spur interest.

I'm disappointed, utterly, in their complete inability to check out something so important, that impacts the very people they claim to represent. Hopefully they will update the newer Zamboni stuff and cover the symposium eventually. Doubt it but one can hope!
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 bestadmom » Tue Oct 06, 2009 6:22 pm

I'm not thrilled with their post. It's cursory response because they had to say something.

I reaised the question with the CT and national chapters about why they didn't report on CCSVI after Bologna. Their response to me was they could only find postings on forums (Tims?) and postings in other languages. They were not looking very hard, and they are not reporting in their post. They have slanted it with negative opinion, and were fast to say DMD's are proven effective.

They are not going to bite the hand that feeds them until they have no choice.

Michelle
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Postby cheerleader » Tue Oct 06, 2009 7:18 pm

Thanks for finding this, Bob...and for noticing the timing. Interesting, eh? It's sure not saying, "Wow! Terrific...let's do some more research!" But the NMSS isn't precluding funding for research. They're just trying to keep everybody calm...alright children, settle down. Stay on your meds!

I'm going to look at the positive here (because that's what cheerleaders do) and say that this is testament to the power of grassroots movement and patients knocking on doors. It's out in the open...and anyone can google CCSVI and find Ashton Embry's take on it or Dr. Mark Haacke's website or all of Dr. Zamboni's research papers and very soon, the Canadian National TV news special on Dr. Zamboni, Dr. Dake and Jeff. There's no putting CCSVI back in the box. And this isn't snake oil we're talking about. It's research: real MS patients, real solutions to chronic venous insufficiency.

more to come!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Tue Oct 06, 2009 7:35 pm

I was happy to see the common sense approach they were taking regarding CCSVI. I think everyone who is interested in CCSVI should have a look at the societies advice and I like Cheer am glad it is out in the open. The more voices the more insightful viewpoints we get.
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