Our NMSS and a puzzling review of CCSVI

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

Postby jay123 » Thu Jan 07, 2010 11:16 am

Thats great that a doctor is going to Canada, learn from Dr. Zamboni and then report to the public! That to me is a huge step that I haven't heard of happening yet anywhere else.

It's too bad he's from Florida (and the dang fool is going to Canada in the winter - lol) where I imagine the density of MS patients is not real high, I know I couldn't handle the heat.

Back to the NMSS, anybody have any thoughts on Dr. Munschauer being on the board and in charge of the Jacob's clinic? It just seems like with the attitude the NMSS has he could have such a conflict within his office.
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Postby dunkempt » Thu Jan 07, 2010 11:28 am

unfortunately its on the other side of canada from me magoo. : ( the olympics are also taking place in BC in Feburary. wouldn't some kind of protest or march that interrupts the games be amazing.


I dunno. I’m not against radical action as such - and I think the Olympics might give great opportunities to get the attention of the gathered media. But I think every other organization in the country that (rightly or wrongly) doesn’t feel it's getting its share of attention in Canada is thinking about interrupting the show too. Heck, lots of them are ready to protest just the existence of the games at all. So I think Olympic interruptions might soon wear out their welcome and their effect.

Which is just to say, let's try to think of a positive way of doing it. Anybody know of Canadian Olympians with any MS connection?

-d
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Postby markus77 » Thu Jan 07, 2010 11:36 am

agreed dunkempt, i was just venting. us msers are not a roudy bunch physically speaking but what we are is, intelligent and well informed. which means we can use the internet to our advantage. many people here are very gifted with the ability to write inspiring stories and columns. this is where we can shine. i myself do not have that gift.
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Postby Mechanicallyinclined » Thu Jan 07, 2010 3:17 pm

Posted: Fri Jan 08, 2010 4:16 am Post subject:

--------------------------------------------------------------------------------

Thats great that a doctor is going to Canada, learn from Dr. Zamboni and then report to the public! That to me is a huge step that I haven't heard of happening yet anywhere else.

It's too bad he's from Florida (and the dang fool is going to Canada in the winter - lol) where I imagine the density of MS patients is not real high, I know I couldn't handle the heat.



Jay although our population isn't as high as yours, on a per capita basis (if that's the right term) we have a higher ratio of MSer's than you do. Actually I'm giong down south for a bit this winter and I know I'll feel better. Although it will be hot , it's a little easier to handle in some ways cuz you're not stiffening up from the cold. And what's wrong with Canada EH? lol
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CCSVI and National Multiple Sclerosis Society

Postby NMSS » Thu Jan 07, 2010 3:35 pm

Hello. We would like to provide some additional information into how the National MS Society is moving CCSVI research forward to benefit people living with MS. We want to assure you that Society is steadfastly committed to pursuing all promising avenues of research that can lead to improved treatments and ultimately, a cure for MS and that we have been working as quickly as possible to pursue the new CCSVI lead. We encourage you to visit our website, http://www.nationalMSsociety.org , to keep on top of the latest news regarding these CCSVI efforts. In reading the comments, we thought some additional background information would be of interest

On December 16th, the Society invited investigators from around the world whose research is relevant to multiple sclerosis to apply for grants that would explore the CCSVI lead. We have already received numerous letters of intent from scientists in the U.S. and six other countries abroad. Full grant applications are due on February 9.

To ensure that this will be a coordinated worldwide MS Society strategic effort, in May 2010, an international panel of MS experts will conduct an expedited review of applications submitted in response to the special request for CCCSVI grant applications.

In June 2010, funding decisions will be announced and on July 1st, we anticipate work will start on the approved research applications.

Although the Society expressed a cautionary note in its comments concerning CCSVI and endovascular surgery, this does not reflect our reluctance to immediately investigate every opportunity that might lead to the end of MS, but reflects our natural concern arising from our knowledge that the proposed corrective CCSVI surgery has resulted in a number of adverse events, including at least one known death.

We will continue to keep people with MS and the general public informed of our progress in CCSVI research as well as the other research we are funding to stop, reverse and prevent MS through our Web site, e-communications and Momentum magazine. We appreciate the opportunity to participate in dialogue with you around this topic.

-Arney with the National MS Society
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Re: CCSVI and National Multiple Sclerosis Society

Postby Johnnymac » Thu Jan 07, 2010 3:41 pm

NMSS wrote: but reflects our natural concern arising from our knowledge that the proposed corrective CCSVI surgery has resulted in a number of adverse events, including at least one known death.


Arney, thank you for posting here....you're a brave one!

The quote above is a reflection of why you see so many angry MSers. The death in question was NOT related to CCSVI treatment, and its throwing statements like that out in defense of the NMSS comments regarding CCSVI that REALLY makes people angry. If you're going to quote a death then it need to be 100% verified and unless there is another death of a patient who went through CCSVI treatment that we don't know about then the NMSS needs to retract that statement.
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Postby Mechanicallyinclined » Thu Jan 07, 2010 3:49 pm

I agree Johnnymac . It is my understanding that yes one person died who undersent a CCSVI treatment but that dead was not attributed to the treatment itself. Arney is that not correct?
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Postby Johnson » Thu Jan 07, 2010 3:55 pm

markus77 wrote:unfortunately its on the other side of canada from me magoo. : ( the olympics are also taking place in BC in Feburary. wouldn't some kind of protest or march that interrupts the games be amazing.


A protest/disruption would be much more trouble than it is worth. "They" are turning the Lower Mainland into a police state, complete with acoustic weapons!, and CSIS and the RCMP are pushing civil liberties under - by calling on known activists, etc., to come in for an interview. They probably already have your information - for even suggesting disrupting the frivolities (Games) here. Besides, what would we be protesting about?

Things might be moving more slowly than some of us might like to see, but I am grateful for all small mercies after spending 17 years dealing with MS, and it is no small mercy that we have some real hope now. It is incredible, for me, that after finally accepting that my life was going to get a lot more hellish than it is, I can now look forward to being rid of this cursed dis-ease - all in two months time.

I'm a lot happier than peed off.
My name is not really Johnson. MSed up since 1993
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Postby ozarkcanoer » Thu Jan 07, 2010 4:29 pm

Arney,

If someone from the NMSS would watch this board more closely then you would know that there was no death attributed to CCSVI treatment. And as for funding, there are several groups in Canada and the USA who are researching CCSVI now and who need our help NOW, not in June. I have donated to one of the studies and plan to donate more. I think the NMSS came across as too cautious and dismissive when you first responded to CCSVI.

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Postby cheerleader » Thu Jan 07, 2010 4:35 pm

Dear Arney-
Welcome.

Dr. Paolo Zamboni's Liberation Procedure has had no ill-effects in any patients. It has only brought remission from MS symptoms and a stopping of progression. The minor side effects shown in his peer-reviewed published paper on endovascular treatment were headache and incision site bleeding at the groin.

If you are going to issue official statements, it is ESSENTIAL that you have your facts straight.

There have been other endovascular procedures in other locations, and there have been side effects including stent migration and accessory nerve damage....but there have been no deaths.

Again- There have been NO MAJOR SIDE EFFECTS with Dr. Zamboni's Liberation treatment. Please correct your statement immediately, to show that the MS Society is going to be open, honest and not prone to rumor mongering.

Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby markus77 » Thu Jan 07, 2010 5:19 pm

i think that most MSrs who read that post by NMSS already know there was no death affiliated with CCSVI. they (NMSS) do not seem to realize that we are much more intelligent and informed than they think we are. they seem to think we are naive and they can take advantage of us like they have been for so many years. now that pandora's box has been opened they are down right sacred.
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Postby Mechanicallyinclined » Thu Jan 07, 2010 5:40 pm

But statements that include the warning of death from the MS Societies and the MS clinics are just ways of trying put that element of fear into the puplic so that everyone is afraid of this and we are scared to come close to it. We know the risks Arney . Why can't we just not beat around the bush with this.
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Postby jay123 » Thu Jan 07, 2010 5:57 pm

Mechanicallyinclined wrote:
Posted: Fri Jan 08, 2010 4:16 am Post subject:

--------------------------------------------------------------------------------

Thats great that a doctor is going to Canada, learn from Dr. Zamboni and then report to the public! That to me is a huge step that I haven't heard of happening yet anywhere else.

It's too bad he's from Florida (and the dang fool is going to Canada in the winter - lol) where I imagine the density of MS patients is not real high, I know I couldn't handle the heat.



Jay although our population isn't as high as yours, on a per capita basis (if that's the right term) we have a higher ratio of MSer's than you do. Actually I'm giong down south for a bit this winter and I know I'll feel better. Although it will be hot , it's a little easier to handle in some ways cuz you're not stiffening up from the cold. And what's wrong with Canada EH? lol


Mechanic,
You really mis-read my post. I said that the doctor is from FLORIDA where the MS density is probably not high. If you notice from the previous post he is from the university of southern Florida. It is great though that he is doing it.
As far as my JOKE about him leaving Florida in February to go to Canada, I hope you got the irony of that one! I have nothing against Canada, a matter of fact some friends and I like to go over the border once in a while to see the Canadian Ballet (this is another inside joke for those that don't catch it!) in Niagara Falls, but the beers are kind of expensive at those places!



Second Point - I have a hard time believing that "Arnie" is really from the NMSS. If that was an official post he should have at least included his whole name. In addition, if it was an offical post it does show what kind of a bush league organization they have become that they feel the need to post on a forum like this with a post that isn't signed by someone.
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Postby magoo » Thu Jan 07, 2010 6:09 pm

Arney,
Thank you very much for addressing our concerns. I still hope to hear from Mr. Reichert himself in order to give him a detailed account from a person who has had treatment for CCSVI and has had incredible results.
I think June is much too long for us to wait for these proposals to be funded. Time is of the essence for each of us with MS. There must be a better timeline than that. I'm sure the MS Community who raises money for the Society would back a more swift process.
I also agree with my friends here that the statement made about a death and a number of adverse events is incorrect. Please only post statments like this with facts to back them up. You are doing a disservice to us all when you relay inaccurate information.
We would all appreciate a more cooperative effort with The Society with respect to CCSVI research.
Rhonda
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 cheerleader » Thu Jan 07, 2010 6:11 pm

Contact: Arney Rosenblat
212 476-0436/ arney.rosenblat@nmss.org

Arney handles press for NMSS- if this is her...
cheer
Last edited by cheerleader on Thu Jan 07, 2010 7:51 pm, edited 1 time in total.
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