Denied CCSVI table at MS Walks

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

Postby bluesky63 » Mon Feb 28, 2011 7:45 am

Well, here's where we go in circles though. I agree that the point of the MS Walk and the MS BIke Ride is to raise money. So they would charge money to have a booth, table, etc., no matter who was setting up the table or tent, right?

But CCSVI is part of their recognized research, so they can't "forbid" distributing information or having a table about it.

I would see this as just including information that could help people in a balanced way, the same way that I see people offering information on other wellness topics.

Suzanne, back to you. Sorry to be so blabby on your thread! :-)
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Postby Cece » Mon Feb 28, 2011 9:33 am

MrSuccess wrote:the most important CCSVI conversations will take place between medical professionals

I'm reminded of EJC, in the last few days, playing a role in getting Dr. Reid's email to Dr. Sclafani so that those two doctors can share what they're finding. Or of Cheer bringing the research to Dr. Dake and launching him into this. Or bestadmom bringing it to Dr. Sclafani and however it was from there that he made contact with Dr. Zamboni himself. Extremely important conversations are happening between the doctors, it's why I get excited at every ISET or SIRS conference or ISNVD! But I agree with 1eye, extremely important conversations are happening patient-to-patient as well. None of us would know about it if it weren't for the person who told us.

I learned about it here at TIMS, there was already a CCSVI forum by the time I learned about it, I was a latecomer! Since my procedure I have been feeling such gratitude to every person involved in this because it is life-changing. And we have the opportunity to share information with others and have it be life-changing for them as it has been for some of us. If people are drowning and you know where the lifesavers are stashed, there is an obligation to share that and a great joy in doing so.

With CCSVI being part of their recognised research, as bluesky mentioned, it is more the association between MS and CCSVI that is recognised, not yet the treatment of venoplasty. But you can't talk about the one without the other.
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Postby MrSuccess » Mon Feb 28, 2011 10:04 am

Cece - I seem to remember Dr. Dake's introduction to Dr. Zamboni and CCSVI quite differently. You can look this up ... if you have the time .... but the story goes .... that Dr. Dake was already at a medical conference in Europe ..... when he [ Dake ] just happened to see a presentation posted about something called '' CCSVI '' . Intrigued ..... but dubious .... Dr. Dake took the Zamboni presentation in .

Upon returning to Stanford ..... Dr. Dake was informed by his colleague ...Dr. Cook ..... of a patient and his wife [ Ringleader ] wanting to explore the possibility that Dr. Zamboni's new theory might be the solution to his medical distress.

If you have followed the CCSVI trail .... from Day One .... you know the rest of the story .

However ...... this clearly illustrates my point ..... that ....... this great discovery can best advance from ... Doctor to Doctor to Doctor .....

Zamboni .... > Dake ......> Cook .... > Dake ....... and so on ......

Please do not interpret this as my dismissing the power of the grassroots.

CCSVI is nowhere ..... without that strong presence. And the NMSS could and should make a stronger CCSVI advocacy.

I read about your post CCSVI improvements ..... smiling..... like a butchers dog ... :wink:




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Postby 1eye » Mon Feb 28, 2011 12:03 pm

But .... please take note they [ the NMSS ] have published on their web-page .....
information that they will gather and produce results from their CCSVI investigative studies .....every 6 months


If you were on the facebook page where they announced that, you might have seen my reply that I can't hold my breath for more than about 60 seconds, and if I thought they were actually looking to find out something that wasn't already known, I might be willing to wait for them to figure it out. But they're not, and I'm not.

I have no illusions about the kind of 'results' I will see from them. I have known a few doctors whose opinions I respect, and I've seen a lot of them in this investigation. At least in Canada, though, I believe doctors are in the clutches of a lot of people who could not practice medicine if they wanted to, and have no idea what it would involve if they tried. Science is the least of their concerns.

The most important decision for 'MS' patients about CCSVI in this country, was taken by a lot of unskilled society fundraisers and prejudiced doctors (not to mention one highly-paid drug company lobbyist) after deliberately excluding anybody who knew anything about it from participating. I have less than zero confidence in this dialogue or its pace. Grassroots is not only the only game in town here, it is the only game, period, in this country, outside of Saskatchewan, until and probably for some time after the election. Shall we wait for 'MS' Society research? Yes lets. Maybe we won't even die waiting... as long as we don't hold our breath.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby bigfoot14 » Mon Feb 28, 2011 4:34 pm

Back on topic.....Zanne why don't you just have a bunch of T-shirts printed up for you and your friends to wear with something like

"Ask Me About CCSVI"


Then have some informational brochures with you to hand to anybody that asks
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Postby 1eye » Mon Feb 28, 2011 5:00 pm

Sent you a suggestion Suzanne. In your Inbox.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Mon Feb 28, 2011 5:02 pm

"Ask me about CCSVI in MS"

I agree with - was it vonna? - that you need the MS in there too, it raises more interest in people who don't know what CCSVI stands for.
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Postby bluesky63 » Tue Mar 01, 2011 3:53 am

And the perfect thing is that it brings it back to a positive interaction! :-)

I believe she used the term "multiple stenosis" but I need to double check.

Here it is. Suzanne, I don't know if you've seen this, but here is a link to a thread about CCSVI awareness walks:

http://www.thisisms.com/ftopict-15629-.html

I hope your efforts make a difference in Seattle, and I hope your recovery is continuing! :-)
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Postby L » Tue Mar 01, 2011 9:19 am

Al Sha3b Yoreed Esqat El Nezam!

I love the direct action approach! The mega-corporations, the too-big-to-fails must be demolished brick by brick!
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Postby KDGO » Wed Mar 02, 2011 8:46 am

I understand your frustration and interest in contributing to the MS cause. It sounds as if this is a square peg in a round hole or someone doesn't want to "play" with you...so perhaps you might consider playing with others? There are several CCSVI trials or other MS organizations that are needing people like you! versus wasting your time with the NMSS. IMO It's a shame I know but your efforts will be so much more appreciated elsewhere!
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