This Is MS Multiple Sclerosis Community: Knowledge & Support

New at www.ccsvi.org ---


CCSVI Alliance President Sharon Richardson facilitated a discussion between Dr. Paolo Zamboni, originator of the CCSVI hypothesis, and Dr. Jack Burks, prominent MS neurologist.

Recorded on January 17, 2011, at the International Symposium on Endovascular Therapy (ISET), in Miami Beach, Florida.
Enjoy this CCSVI Alliance exclusive video--

http://www.ccsvi.org/

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

good interview....but why does every neurologist bring up all the past "far out" therapies such as snake venom, bee stings etc. Surely they can see that CCSVI is not one of these....they just seem to love bringing this up time and time again.....they seem more worried about being duped again. Lucky we have the internet now so guys like this can't just disregard this as just another "far out cure".

Yes---that always amuses me, Jackie. All of the "far out" treatments address tha vasculature. Bee stings and snake venom are vasodilators via the histamine response, and bring about an immediate opening of vessels and rushing of blood. They are temporary "hits" of good bloodflow. And I agree, I think the fear is of being "duped" or having their patients' hopes raised before the research is in...and that's a valid concern. Dr. Burks is a good doctor, and concerned for his patients. He's also interested in Dr. Zamboni's discovery, and willing to talk with vascular doctors and reach across the aisle. We need more Dr. Burks!
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Joan, thank you for this.

Allow me to make a few observations:

1. if I compare this with what we heard a year ago, it occurs to me that the multiple sclerosis association has made a complete turn. It is very encouraging to hear its president say we need people with new ideas, who can think out of the box..

2. this matter needs truly multi-disciplinary cooperation. That is at least neurologists, vascular specialists and endocrinologist (feeding of the cells). I found this link this morning on the Dutch forum: http://www.direct-ms.org/pdf/CausalSpec ... cOxide.pdf The link with diabetics is mentioned; comes close to the low-glucose concept as well.

3. the discovery of dr. Zamboni, combined with this "new global college" on the Internet, is so disruptive that there is a real risk that the whole health system will stagnate. That is not good for us as patients because we loose a little bit more every day. Speed is of the essence. May be this needs help from the outside.

Leo

Not sure I understand the stagnation comment, Leonard...we need neurologists to work with vascular doctors in clinical trials. We need them to measure their patients pre and post angioplasty, we need their longetudinal studies.

There has been a huge shift in the past year, in some segments of the neurological community. Dr. Burks is one example, and it is thanks to the hard work of Alliance president, Sharon Richardson, that he is in dialogue with the vascular doctors. It may seem slow to patients, but in terms of research, we're moving a warp speed.
also--thanks to Marc for his warp speed editing skills...he makes us all look good
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Joan,

The solution will not be found by neurologists and vascular people only. We must not make the mistakes of the past again but keep our eyes open. This community has come very far, really, and a lot is thanks to you personally. But we did so by thinking outside the box. And we should do so in the future.

I am convinced that endocrinologists have a very important role to play here as well. I am very serious on this: MS is to do with a low nutrition condition of the brain, caused either by the narrowings of the veins and iron depositis or by a hardening of the veins at mid age, or a combination of both. See http://www.thisisms.com/ftopict-15188.html Everything that I have seen since I posted this first time fits within this concept. And I have some very encouraging words from real specialists in this matter.

On the stagnation: Everything in health care today is structured, I am sure in America this is not different from Europe. We have all these disciplines, and they all have their own associations. The specialists have their own field of expertise and their own protocols. Everything outside this (eg our problem) involves risk to them and is doomed. Moreover, I understand that the boundaries of their fields are very well defended, there is much envy, etc.

In this highly compartmentalized system, all disciplines have their own protocols. These protocols have been cast in stone. Anything outside that presents risk is not welcome (so has to be FDA approved etc, you mention it...) Over and above, issues of identity, status, interests etc play a big role. Altogether this means that little to no pioneer spirit remains, like maybe 40 or 50 years ago was there. And that is unfortunate because we need pioneer spirit to solve our problem. But also the knowledge, skills, experience etc.

Hence, if you talk about real multi-disciplinary collaboration and an open mind into it, you talk about cultural preparation. And that is a big challenge with a real risk of stagnation if the disruption is too big! I sense that may be the case here. We need and we want fast progress, not a system that turns around three times first before it decides where to go.

Leo

A great presentation from dr. Bill Code, a medical doctor and diagnosed with MS, about the liberation treatment starts at 22:25

http://www.ustream.tv/recorded/12720508

On the risk of stagnation of the system: listen to what he has to say as of 01:02:00 I do not know what is happening over here in Europe, but it would surprise me if that was very different from what is happening in Canada.