German neuros (again)

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

Postby cah » Wed Sep 22, 2010 11:08 am

Concerned, 1eye, couldn't you discuss this elsewhere? It has nothing to do with the german neuro's press release. Thank you!

Minutes ago, Doro, who went with Bonfire to the press conference has written this in the csvi-ms.net forum:

Doro wrote:Hello folks,

I'm now back from Mannheim and a little bit wiped out. Nevertheless I want to give you a short info.

Thanks to Bonfires arm-twisting, we could attend the press conference. So we had the opportunity to listen attentively to Dr. Gold's and Dr. Hartung's explanations. ;)
There were supposedly 15 to 20 pressmen present.
The whole event was organised in a way that the pressmen hardly had any time for questions. They didn't give the impression of being very interested anyway. Seemed to be an obligatory act for them.
But we have managed to give everyone of them a paper with the counterstatement. Sadly nobody of them wanted to talk to us more in-depth, though.
After a short coffee break, we distributed the rest of the 250 sheets we had all over the congress center.

Little side note: Because of the narrowness of the room, I happened to bump into Dr. Hartung and rolled over his briefcase when I went in. I hope it didn't took any damage. :lol:

That's it for today. I'm sure Bonfire will share his impressions with you after his long way home.

Doro
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Postby cheerleader » Wed Sep 22, 2010 1:30 pm

cah wrote:Concerned, 1eye, couldn't you discuss this elsewhere? It has nothing to do with the german neuro's press release. Thank you!


yes. please.

Minutes ago, Doro, who went with Bonfire to the press conference has written this in the csvi-ms.net forum:

Doro wrote:Hello folks,

I'm now back from Mannheim and a little bit wiped out. Nevertheless I want to give you a short info.

Thanks to Bonfires arm-twisting, we could attend the press conference. So we had the opportunity to listen attentively to Dr. Gold's and Dr. Hartung's explanations. ;)
There were supposedly 15 to 20 pressmen present.
The whole event was organised in a way that the pressmen hardly had any time for questions. They didn't give the impression of being very interested anyway. Seemed to be an obligatory act for them.
But we have managed to give everyone of them a paper with the counterstatement. Sadly nobody of them wanted to talk to us more in-depth, though.
After a short coffee break, we distributed the rest of the 250 sheets we had all over the congress center.

Little side note: Because of the narrowness of the room, I happened to bump into Dr. Hartung and rolled over his briefcase when I went in. I hope it didn't took any damage. :lol:

That's it for today. I'm sure Bonfire will share his impressions with you after his long way home.

Doro


thanks for giving us Doro's report, cah. I'm glad that the MS patients- the people who suffer from this disease- were allowed to attend the press conference and give additional information. I'm still not sure why the German Neurological Society felt this conference was necessary....but at least another perspective was represented. good work,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Wed Sep 22, 2010 1:35 pm

Concerned, 1eye, couldn't you discuss this elsewhere? It has nothing to do with the german neuro's press release. Thank you!

exactly.
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Postby cah » Wed Sep 22, 2010 2:27 pm

cheerleader wrote:thanks for giving us Doro's report, cah. I'm glad that the MS patients- the people who suffer from this disease- were allowed to attend the press conference and give additional information. I'm still not sure why the German Neurological Society felt this conference was necessary....but at least another perspective was represented. good work,
cheer


The press conference wasn't all about CCSVI, it wasn't even all about MS. It was the press conference of the Neurowoche (neuroweek) symposium. The CCSVI treatment was one of several topics. It seems a bit that they needed a more catchy topic than "Um, well, there's a neurological meeting..." for the german press. Let's hope so!

Doro told me that they spoke much more softly about CCSVI in the press conference than in the press release.

But that doesn't make their press release any better, and this is what was published widely in the media !
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby cah » Tue Sep 28, 2010 11:29 am

They have now published a new press release. Maybe our efforts had some tiny effect, as it is much less off the mark. Zamboni's work is now "scientifically unproven" and "Studies show that the theories of Dr. Zamboni are untenable". Treatment is "unjustified" according to the existing Data. Cases of death are now "sporadic"... well, the step in the right direction is very, very tiny. :roll:

Still it has some major mistakes in it (As we all know, Zamboni isn't recommending stents, but that's exactly what the press release says).

Especially the last paragraph might be of interest to you, as the canadian MS Society and the CIHR is named:

DGN wrote:The study results presented by Zamboni et al. lack a solid scientific methodology and thus are worthless and even ethically questionable. This is the conclusion of many scientists, as reported in the statements of the "Deutsche Multiple Sklerose Gesellschaft" (DMSG, German MS society) from December 2009 and the Canadian Institutes of Health Research and the MS Society of Canada from August 2010.


They provide links to three works of Dr. Zamboni, one of Doepp and one of Khan, but not to the statements of CIHR or MSSC. Can someone show me a link where they called Dr. Zambonis work "worthless and ethically questionable"?

I don't know for sure, but I think there is no such statement (except for the DMSG). Perhaps somebody could ask someone of the CIHR or the MSSC if they think it's ok that german neuros (DGN) quote them wrong...

Here's the link to the original: http://www.klinikum.uni-heidelberg.de/f ... _final.pdf Funny that it has no date and isn't released on the website of the DGN, but in the download section of the Heidelberg University Hospital and not shown in their website section "press releases".
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Postby Leonard » Wed Sep 29, 2010 8:52 am

at one point the new German release says: ... there is not enough prove...
I hear exactly the same from neurologists over here.

but I ask myself, and I ask them, prove of what?
never got an answer, still the question is an important one.

it may be true that we do not know the whole cascade of effects that causes MS; the video's of the Sclafani event are instructive.

but is that the question to be answered?
perhaps for the neurologists, it is.

but for the patients and the other doctors, perhaps that is not so important.
for them, what counts is what does a proper bloodflow for the patient.
and this may be underlying the difference of views all around.

apart from that, this press statement has some gross errors, is very tendentious. ba..
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Thanks Doepp

Postby joge » Fri Oct 01, 2010 11:01 pm

august 5, 2010, an editorial was published bij ccsvi.nl. In this editorial they show, using de German data, that Doep et. al have found evidence for CCSVI in their paper. They are misinterpretating their own data, ha ha!

In a recent interview with dr. Zamboni by ccsvi.nl, dr. Zamboni confirmed their (ccsvi.nl's) findings.

http://www.ccsvi.nl/Opinie/CCSVInl/DuitsOnderzoek.aspx
I'm ready, I'm ready !
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Postby sbr487 » Fri Oct 01, 2010 11:12 pm

One of the best find, Joge. Lets hope pioneers dig out more and the truth comes out soon ...
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
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