Our NMSS and a puzzling review of CCSVI

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

Postby jay123 » Fri Jan 08, 2010 6:34 pm

AlmostClever wrote:FYI My nuero just sent me an e-mail saying that the Annals of Nuerology will have a story about the death this month. (Wow - she's pretty cool!)


This is actually a little scary for us depending on how it is written, especially since it is an a neuro journal. I don't think we are most neuro's favorite people!
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Postby AlmostClever » Fri Jan 08, 2010 8:04 pm

Thanks for clearing that up...

I wonder what kind of negative spin the article will give on this...
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Postby greenandchic » Sat Jan 09, 2010 12:22 am

JoyIsMyStrength wrote:
My point is, he sounds like someone who fears losing the support of the big money drug companies that help pay his salary. Non-objective at best. I think this new discovery is backing the NMSS into a corner. If they would be real and listen, they might be surprised at the outpouring of support from the folks who really matter: the patients!

I have never donated to the NMSS because I have never been sure that they were not being pressured and influenced about all of our options. This makes me even more convinced. Why does everything have to be such a fight? Why should these ideas be shot down so quickly when clearly there is a real effect on real people?

Maybe in time we can organize our own walk, call it the CCSVI walk, only it will be comprised of people like you who have improved dramatically and in that case we could change it to a run!

Pam


I totally agree with you, Pam. Its really scary if his motivation is his salary and not the lives of millions of people - the same people he claim to serve.

When people asked me why I never participated in any walks or donated money, THIS is the reason. I didnt have proof in the past, but now I do.
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Postby Johnson » Sat Jan 09, 2010 12:41 am

greenandchic wrote:
JoyIsMyStrength wrote:
My point is, he sounds like someone who fears losing the support of the big money drug companies that help pay his salary. Non-objective at best. I think this new discovery is backing the NMSS into a corner. If they would be real and listen, they might be surprised at the outpouring of support from the folks who really matter: the patients!

I have never donated to the NMSS because I have never been sure that they were not being pressured and influenced about all of our options. This makes me even more convinced. Why does everything have to be such a fight? Why should these ideas be shot down so quickly when clearly there is a real effect on real people?

Maybe in time we can organize our own walk, call it the CCSVI walk, only it will be comprised of people like you who have improved dramatically and in that case we could change it to a run!

Pam


I totally agree with you, Pam. Its really scary if his motivation is his salary and not the lives of millions of people - the same people he claim to serve.

When people asked me why I never participated in any walks or donated money, THIS is the reason. I didnt have proof in the past, but now I do.


One thing that I always assume when dealing with people whom have letters behind their names (and use them), is ego. For that reason, I disdain, and then feel compassion for them. So lost... Then, I ignore their buzzing, for they are meaningless. A lot of egos are totally money oriented. Assume that. Give me the MD who drives a 1973 Datsun, or walks to work.

Jay123,

The neuros have little to do with CCSVI, only give them the weight that they have to get you fixed up. It is the vascular people, and the interventional radiologists, etc. who will help us, and who will count. I believe that neurology has its place in our recovery, but we need to deal with the pathologies that precipitate the neuro effects, first.

Neurologists may have called the shots for pwMS for umpteen years, but they do not control the medical field.

/ibabble
My name is not really Johnson. MSed up since 1993
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Postby jay123 » Sat Jan 09, 2010 7:19 am

Johnson wrote:Jay123,

The neuros have little to do with CCSVI, only give them the weight that they have to get you fixed up. It is the vascular people, and the interventional radiologists, etc. who will help us, and who will count. I believe that neurology has its place in our recovery, but we need to deal with the pathologies that precipitate the neuro effects, first.

Neurologists may have called the shots for pwMS for umpteen years, but they do not control the medical field.

/ibabble

Johnson,
Agree with you except for the fact that at this point neuro's still 'own' MS and the majority of these clinical trials will be run under their direction, espcially if they are getting grants from the NMSS. If negative articles do come out (and it is not for sure the Annals of neurology Journal article will be negative) then it will be another roadblock for CCSVI to get around.
If/when CCSVI is scientifically proven then perhaps 'ownership' of MS will pass on, but until then the neuro's must be dealt with.
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Postby vendredi5h » Sat Jan 09, 2010 10:44 am

magoo wrote:Yannick,
I'm sorry you feel this is so negative. I happen to feel it is important to know since so many doctors and MSers look to the NMSS as a resource.
We need to look at all sources of information on CCSVI and insist they remain honest and accurate. This can only help our cause. Believe me, no one is more excited to scream and yell the praises of CCSVI than me! I am living proof that it works.

Magoo, my comment was not directly against you or your thread. Don't bother to much with my comments. I think I felt a bit "intense" that night! :lol: I simply wanted to put in perspective the useful purpose or uselessness or maybe even the lagging forces that NMSS are putting on CCSVI, and that we do not have to include them in this endeavor. They get the importance that we choose to give them. I do feel very well knowing that they wouldn't be of any help for us, but realising that they put so much negativity in the CCSVI community, is making me feeling real bad! :twisted:

Have a great week-end!

Yannick
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Postby magoo » Sat Jan 09, 2010 3:04 pm

Yannick, I appreciate your input and I too think we should not get caught up in the negatives.
There is so much good going on despite the lack of enthusiasm seen from some of our so called "supporters".
I feel so lucky to have been helped by the bravery and intelligence of Zamboni and Dake. I just won't be okay until we all get better.
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 GinR » Sat Jan 09, 2010 7:50 pm

jay123 wrote: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.


Hey Jay!

Dr. Krolczyk is a WONDERFUL Neurologist (My mom's for the past 3 years.) We have been BOMBARDING him with information since the beginning of November regarding CCSVI. He is out of the University of South Florida and is the Director of the MS Center at the university. Thankfully he has a VERY open-mind regarding treatments. His patients are extremely excited to find out that he is putting on an Educational Session SO quickly after meeting with Zamboni and Haake.

I will be attending this session and look forward to sharing what I find out! (I also think he is crazy to go to Canada in the winter.. but hey it did snow here today!)

mangio wrote:Anyone,
Where is Bryd Center?


It is located in Tampa, FL on the University of South Florida Campus.

~GinR
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Re: CCSVI and National Multiple Sclerosis Society

Postby bigfoot14 » Sat Jan 09, 2010 10:07 pm

NMSS wrote: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


Parts of this are taken word for word from: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206 which was updated Jan 7 2010

So I don't blame her for the mis-information, I blame her bosses

:evil:
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Richert Going to Biogen

Postby Shayk » Fri Feb 12, 2010 6:58 pm

Well, I find this news rather remarkable--didn't see it earlier today on the NMSS site either.

Multiple Sclerosis Experts Join Biogen Idec's Research and Development Team
John R. Richert, M.D., will be joining the Company as a Senior Fellow in Neurology Research and Development and Nancy D. Richert, M.D., Ph.D., will be joining as a Fellow in Neurology Research and Development.

Dr. John Richert joins Biogen Idec from the National Multiple Sclerosis Society (NMSS), where he served as executive vice president for Research and Clinical Programs for the past five years.

The beat goes on....

Sharon
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Postby tazbo » Fri Feb 12, 2010 7:49 pm

Shouldn't this entire thread be given to somebody in government that looks into conflicts of interest that compromise the service they are hired for? I wish I knew more about where to send this amazing thread of abuse and deception against ms'ers.
And read this crap if you aren't mad enuf...
<shortened url>
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Postby AlmostClever » Fri Feb 12, 2010 9:35 pm

Abstract from Annals of Nuerology:

A chronic state of impaired venous drainage from the central nervous system, termed as chronic cerebrospinal venous insufficiency (CCSVI), is claimed to be a pathologic phenomenon exclusively seen in multiple sclerosis (MS). This has invigorated the causal debate of MS and generated immense interest in the patient and scientific communities. A potential shift in the treatment paradigm of MS involving endovascular balloon angioplasty or venous stent placement has been proposed as well as conducted in small patient series. In some cases, it may have resulted in serious injury. In this Point of View, we discuss the recent investigations that led to the description of CCSVI as well as the conceptual and technical shortcomings that challenge the potential relationship of this phenomenon to MS. The need for conducting carefully designed and rigorously controlled studies to investigate CCVSI has been recognized by the scientific bodies engaged in MS research. Several scientific endeavors examining the presence of CCSVI in MS are being undertaken. At present, invasive and potentially dangerous endovascular procedures as a therapy for patients with MS should be discouraged until such studies have been completed, analyzed, and debated in the scientific arena. Ann Neurol 2010

Cost is $30 to read the actual article but I didn't feel it was worth it. Sure it's completely negative anyways...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: Richert Going to Biogen

Postby zap » Fri Feb 12, 2010 10:56 pm

Shayk wrote:Dr. John Richert joins Biogen Idec from the National Multiple Sclerosis Society (NMSS), where he served as executive vice president for Research and Clinical Programs for the past five years.


Wow.
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Postby LR1234 » Sat Feb 13, 2010 2:39 am

Biogen are busy recruiting top MS specialists and those form MS societies all of a sudden... What is going on??? I would love to know what the reasons are for this sudden headhunting.
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Postby whyRwehere » Sat Feb 13, 2010 2:41 am

8O How can they live with themselves?!
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