German neuros (again)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
cah
Family Elder
Posts: 336
Joined: Tue Oct 27, 2009 3:00 pm
Location: Germany

German neuros (again)

Post by cah »

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
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
TMrox
Family Elder
Posts: 263
Joined: Tue Jun 01, 2010 2:00 pm
Contact:

Post by TMrox »

In their opinion.... show me evidence not opinions.

Cases of death? as in plural?

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
User avatar
sbr487
Family Elder
Posts: 865
Joined: Tue Nov 24, 2009 3:00 pm
Location: India
Contact:

Post by sbr487 »

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
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
User avatar
cah
Family Elder
Posts: 336
Joined: Tue Oct 27, 2009 3:00 pm
Location: Germany

Post by cah »

TMrox wrote:Cases of death? as in plural?
Yes, they use plural.
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
PCakes
Family Elder
Posts: 850
Joined: Sun Dec 13, 2009 3:00 pm
Location: Canada
Contact:

Re: German neuros (again)

Post by PCakes »

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
User avatar
BooBear
Family Elder
Posts: 339
Joined: Mon Mar 01, 2010 3:00 pm
Location: Chicagoland
Contact:

Post by BooBear »

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.
Three veins angioplastied.  One renewed life.  
User avatar
LivabirdsHubbie
Family Member
Posts: 91
Joined: Thu Jul 08, 2010 2:00 pm
Location: Northampton UK

Post by LivabirdsHubbie »

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....
User avatar
coin
Family Member
Posts: 63
Joined: Thu Dec 24, 2009 3:00 pm
Location: germany
Contact:

Post by coin »

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
User avatar
cheerleader
Family Elder
Posts: 5361
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader »

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:
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

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Lyon
Family Elder
Posts: 6071
Joined: Wed May 03, 2006 2:00 pm
Contact:

Post by Lyon »

..
Last edited by Lyon on Tue Jun 21, 2011 4:30 pm, edited 1 time in total.
User avatar
cheerleader
Family Elder
Posts: 5361
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader »

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Lyon
Family Elder
Posts: 6071
Joined: Wed May 03, 2006 2:00 pm
Contact:

Post by Lyon »

..
Last edited by Lyon on Tue Jun 21, 2011 4:30 pm, edited 1 time in total.
concerned

Post by concerned »

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.
User avatar
Jugular
Family Elder
Posts: 375
Joined: Mon Dec 21, 2009 3:00 pm
Contact:

Post by Jugular »

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.
User avatar
scorpion
Family Elder
Posts: 1323
Joined: Wed Nov 05, 2008 3:00 pm

Post by scorpion »

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.
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”