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 Post subject: German neuros (again)
PostPosted: Fri Sep 17, 2010 5:56 am 
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Original press release (german): http://www.dgn.org/images/stories/dgn/p ... erapie.pdf

Translation:

Neurologists warn about dangerous treatment in multiple sclerosis

(September 17, 2010) The "Deutsche Gesellschaft für Neurologie" (German organisation for neurology) warns about futile and dangerous vascular surgeries in patients with multiple sclerosis. These surgeries are based on a scientifically untenable theory from the italian physician Paolo Zamboni about the genesis of the disease, leading neurologists criticise. Cases of death are already known. Background of the criticism is the so-called "venous congestion hypothesis" of multiple sclerosis, which is fiercely discussed also as "chronic cerebrospinal venous insufficiency" among experts and in patients forums and seemingly gets more and more followers. "In our opinion there's no sufficient evidence to this hypothesis and more than ever there's no cause for wanting to have the supposed vascular blockage removed in a so-called Liberation Treatment for several thousand euros." says MS-expert professor Hans-Peter Hartung from Düsseldorf, who will present new conclusions to this on the "Neurowoche 2010" (Neuroweek 2010) in Mannheim. With more than 6000 participants, the Neurowoche is the largest neuromedical convention in europe.

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I have no words for that. Can someone react to it? CCSVI Alliance? Direct MS? I'm sure they won't care about what patients and relatives say, and there's no german organisation which would do that. But they all speak english very well...

:x :x :x

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PostPosted: Fri Sep 17, 2010 6:48 am 
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In their opinion.... show me evidence not opinions.

Cases of death? as in plural?

Rox

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.


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PostPosted: Fri Sep 17, 2010 7:09 am 
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TMrox wrote:
In their opinion.... show me evidence not opinions.

Cases of death? as in plural?

Rox


Its good that they make such basic mistakes. That way, it becomes easy to dismiss their work :D

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 Post subject:
PostPosted: Fri Sep 17, 2010 7:13 am 
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TMrox wrote:
Cases of death? as in plural?


Yes, they use plural.

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PostPosted: Fri Sep 17, 2010 7:23 am 
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cah wrote:
Original press release (german): http://www.dgn.org/images/stories/dgn/p ... erapie.pdf

Translation:

Neurologists warn about dangerous treatment in multiple sclerosis

(September 17, 2010) The "Deutsche Gesellschaft für Neurologie" (German organisation for neurology) warns about futile and dangerous vascular surgeries in patients with multiple sclerosis. These surgeries are based on a scientifically untenable theory from the italian physician Paolo Zamboni about the genesis of the disease, leading neurologists criticise. Cases of death are already known. Background of the criticism is the so-called "venous congestion hypothesis" of multiple sclerosis, which is fiercely discussed also as "chronic cerebrospinal venous insufficiency" among experts and in patients forums and seemingly gets more and more followers. "In our opinion there's no sufficient evidence to this hypothesis and more than ever there's no cause for wanting to have the supposed vascular blockage removed in a so-called Liberation Treatment for several thousand euros." says MS-expert professor Hans-Peter Hartung from Düsseldorf, who will present new conclusions to this on the "Neurowoche 2010" (Neuroweek 2010) in Mannheim. With more than 6000 participants, the Neurowoche is the largest neuromedical convention in europe.

- - - - - - -

I have no words for that. Can someone react to it? CCSVI Alliance? Direct MS? I'm sure they won't care about what patients and relatives say, and there's no german organisation which would do that. But they all speak english very well...

:x :x :x


I would like to suggest that if there is solid evidence supporting that we not pursue this dangerous, potentially life threatening therapy.. and if they are caring doctors looking out for our well being, that they would disclose these facts expiditiously and not wait for their 'really big important' meeting. 8O


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PostPosted: Fri Sep 17, 2010 7:26 am 
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Amen.

Not to mention that vascular surgeons and IR's are well aware of any risks posed by the treatment as well, seeing as it is THEIR FIELD OF EXPERTISE.

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 Post subject:
PostPosted: Fri Sep 17, 2010 10:35 am 
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cah wrote:
TMrox wrote:
Cases of death? as in plural?


Yes, they use plural.

They should not even use singular as we all very well know this death was not due to the liberation procedure but a pre-existing condition, the family even made a statement to that effect.
This happened quite some time ago and there have been hundreds done since, no negative effects as far as I know
Are they that quick to publisize the deaths from tysarbi....


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 Post subject:
PostPosted: Fri Sep 17, 2010 12:43 pm 
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it is becoming quite annoying adn am really tired of reading S**t like that......and I really do not know why specifially the German neuros are so opposed to CCSVI? DO they think they are so "knowitalls" of the universe when it comes to MS??? I do not think so because then they would hav found better ways of treating or may be curing it...so unless they come back or pop up with soemthing really good let the IR and VS do what they are good at.....not all germans are like that;-)) some are acctually quite smart and reosanble;-))
Ines, from germany


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 Post subject:
PostPosted: Fri Sep 17, 2010 1:47 pm 
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Just a bit of background info on Dr. Hans-Peter Hartung, past president of ECTRIMS, the author of this paper, and newly announced advisory board member for Opexa Therapeutics:

Quote:
THE WOODLANDS, Texas (August 5, 2010) – Opexa Therapeutics, Inc. (NASDAQ: OPXA), a company developing Tovaxin®, a novel T-cell therapy for multiple sclerosis (MS), today announced it has reconstituted its Scientific Advisory Board with notable key opinion leaders in the MS field. Members of the Advisory Board include Dawn McGuire, M.D. (Chair); Doug Arnold, M.D.; Edward Fox, M.D., Ph.D.; Hans-Peter Hartung, M.D.; Clyde Markowitz, M.D.; Paul O’Connor, M.D.; Chris H. Polman, M.D. and Arthur Vandenbark, Ph.D..
"Opexa is developing Tovaxin, a novel immunotherapy for multiple sclerosis, and this board of advisors represents some of the best and most highly regarded neurologists and immunologists in the world. Each has developed substantial expertise relevant to the further development of Tovaxin including designing and participating in numerous MS clinical trials, understanding U.S. and EU regulatory requirements, new product development, and T-cell immunology and their guidance will be instrumental in our ongoing plans to advance Tovaxin," said Neil K. Warma, President and Chief Executive Officer. "We welcome these distinguished leaders to our team and greatly appreciate their interest and willingness to lend their considerable talents to our development efforts."

Hans-Peter Hartung, M.D. – Dr. Hartung holds the Chair of Neurology at Heinrich-Heine University, Düsseldorf and is chairman of the Department of Neurology. Professor Hartung is a member of a large number of international and nation societies, serving on executive boards (President ECTRIMS; European Neurological Society, International Society for Neuroimmunology, International Federation of Multiple Sclerosis Societies; World Health Organization Advisory Board on Multiple Sclerosis), as well as on the editorial board of a number of international journals. He has authored or co-authored more than 400 articles in peer reviewed journals, written more than 80 book chapters and edited 7 books on neurology, neuroimmunology, peripheral nerve disease and multiple sclerosis.

link


Quote:
Current president (of ECTRIMS) Hans-Peter Hartung, MD, from Heinrich-Heine University in Düsseldorf, Germany, added, "It is a very exciting time in multiple sclerosis therapy research. This is the most active therapeutic field in all of neurology."

Dr. Hartung said that the new potent drugs are prompting neurologists to consult with their oncology and rheumatology colleagues on how to best manage immunosuppressive and cytotoxic agents.

http://www.medscape.com/viewarticle/709185

I do not think Dr. Hartung is open to looking at another mechanism of disease process in MS....certainly not while his career is taking off, and it's such an exciting time in neurology!
cheer

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 Post subject:
PostPosted: Fri Sep 17, 2010 3:30 pm 
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..


Last edited by Lyon on Tue Jun 21, 2011 5:30 pm, edited 1 time in total.

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 Post subject:
PostPosted: Fri Sep 17, 2010 4:06 pm 
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Lyon wrote:

Could it be possible that intelligent, educated people could be familiar with the "science" of CCSVI and still not buy it and at the same time aren't being guided by some kind of demonic ulterior motives?


Bob--Not saying he's demonic, just noting a potential conflict of interest. His statement about the dangers of angioplasty goes beyond not "buying it." He's completely refuting it and calling it dangerous and irresponsible. None of the intelligent, educated vascular doctors and IR specialists have come forward with such a stern warning, that's all I'm saying. They believe this procedure is safe and warrants further investigation.

Perhaps there is a conflict of interest for many of these neurologists- could we agree on that point? (Some of the vascular doctors I speak to comment that the use of cytotoxic and immune ablating drugs and resultant deaths in MS is criminal....but they haven't written position papers about it and published them in vascular journals.)
make sense?
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


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 Post subject:
PostPosted: Fri Sep 17, 2010 4:34 pm 
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Last edited by Lyon on Tue Jun 21, 2011 5:30 pm, edited 1 time in total.

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 Post subject:
PostPosted: Fri Sep 17, 2010 4:57 pm 
Lyon- It's simple. Anyone who has any dealing with medical/pharmaceutical companies is bad unless they are CCSVI docs, like the people on Zamboni's team who receive monies from Biogen and Teva, two companies who really are dependent on DMD sales. That's not a conflict of interests because it is in the interests of the CCSVI racket.


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 Post subject:
PostPosted: Fri Sep 17, 2010 6:10 pm 
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Dr. Hartung might be a brilliant neurologist and a standup guy and all, but he invites the sort of response Cheer made by spewing out mud and misinformation.


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 Post subject:
PostPosted: Fri Sep 17, 2010 6:30 pm 
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Jugular wrote:
Dr. Hartung might be a brilliant neurologist and a standup guy and all, but he invites the sort of response Cheer made by spewing out mud and misinformation.


Oh the nerve of Dr. Hartung . I will agree that spewing out mud and misinformation deserves a response which is why I post on this forum quite often.


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