This Is MS Multiple Sclerosis Community: Knowledge & Support

Shhh... nobody tell Dr. Siskin about Dr. Hartung's warning. He just started the second clinical trial in the U.S. of this dangerous treatment.

The good doctor is entitled to his opinions and he is also free to express those opinions. But if he tries to interfere with any of us getting Liberation therapy then we should all take our canes and go beat the snot out of him.

Just my opinion.

There is far less reason to do science by press release, or to listen to this foolishness.

I had more cause for spending $US on Liberation than this guy will ever come close to knowing about. It seems easy to throw cold water on something that has had better success than 150 years of neurological bungling when you have no symptoms yourself.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Well, thats the result of auto-immune, double blinded, placebo controlled, scientific exercise ...

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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

I think you hit the hammer right on your head. Dr. Hartung's press release belongs on an internet forum. That it heralds a presentation to be made at a scientific convention leads one to expect that the presentation will likewise be an emotionally-laden hatchet piece.

...

Found the schedule of the press conferences: http://www.dgn.org/pressekonferenzen.html

One is held on Sept 21 by Dr. Steinmetz between 12 and 13 h, title:
"Quality management: Neurologists criticise dangerous vascular surgeries in MS"

the other one is held by Prof. Hartung on Sept. 22 between 10 and 11 h, Title: "Wrong theory - dubious therapy: DGN criticises vascular surgeries in patients with multiple scerosis."

Isn't it quite telling that they hold an international meeting, yet fail to have english information on their website? Many speeches are in english language.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Dr. Helmuth Steinmetz is a professor of neurology at Frankfurt University, where Dr. Thomas Vogl is a vascular surgeon/professor and outspoken proponent of CCSVI testing and treatment. Could be a similar backlash we've since at universities in the US--where vascular doctors speak out and are taken to task and scolded by their neurological colleagues.
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

I can't believe people are getting down to the nitty-gritty of specializations etc. I thought these things were being argued on their merits. Sure, an IR is more qualified than a neurologist to do Liberations, but what about a neurosurgeon, or a neurovascular surgeon? Now, of course personally I would be a bit worried, since I've maybe been on the wrong side of the 'law', but frankly, I think any of these guys could do the job.

I'm most concerned about having at least assisted in some prior procedures, because of all the variety of stuff to deal with. It's a fairly new area of study. A qualification with teeth would be nice, but no use wishing for what we can't have.

Anyway the truth cannot be arrived at be throwing or attending enough press conferences.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Now we're getting to brass tacks, are we not? The racket that takes unfair advantage, of people who have been told that, except for the neurologist's experiments and some dangerous drugs, there is no hope. Who are profiteering based on giving bad medicine and hints of progress. Making multi-billions out of a small and vulnerable population who have been told for many years that there is no hope, and nothing more that can be done. The CCSVI racket? It is a godsend in comparison.

I say, hoist the CCSVI Jolly Roger, and let some real men and women show you how it's done.

I think it's really all up to the general practitioner. That is the person who refers, and they are going to clue in that referring one way works, and another doesn't. The patients won't have to be convinced.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Now this press release has hit the news ticker from the dpa, the biggest news agency in germany. If you google "Neurologen warnen vor gefährlicher MS-Therapie" (Neurologists warn about dangerous MS therapy) with the quotation marks for the exact phrase, you get 121.000 Results. Seemingly every online version of german newspaper, small or big, every science or health channel and every medical website has now published it. And of course, the german MS society presents it on its front page.

The dpa version is a little bit different to the DGN one and contains even more rubbish:

Neurologists warn about dangerous MS therapy

Mannheim - A little surgery in the brain is supposed to completely heal multiple sclerosis - about this "futile and dangerous" method the german society for neurology has warned on the occasion of the Neurowoche, though.

The theory of physician Paolo Zamboni is scientifically untenable, said a spokesman of the society on friday. Moreover, there are cases of death that can be associated with it. The society itself will present new conclusions on MS research on the Neurowoche (neuroweek).
According to the Zamboni theory, the blood flows in a wrong direction, into the brain, and causes a vascular blockage there. This is supposed to be removed by a small balloon inserted in the vessel, which is widened again thereby. Such a surgery costs 5000 euros, with additional costs for diagnosis, said the spokesman. "Many sufferers catch every straw though, and are willing to pay for it. And there are more and more offerers" criticises the spokesman.
6000 participants are expected for the Neurowoche. The convention starts on Tuesday (Sept. 21) and lasts until September 25.

Now, it's very clear that even the bloodiest layperson will think that the theory is rubbish after reading this.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Hartung is on-the-take from the pharmaceutical companies big time. Here is the tip of the iceberg regarding the drug money this guy brings home. I suppose one can't blame him for trashing CCSVI given he probably brings in over a million dollars a year of drug company money. As I mentioned in another post, the massive corruption of the neurological community, with compromised guys like Hartung being a great example of such corruption, is very harmful to PwMS.

H. P. Hartung has received honoraria from Bayer HealthCare, Biogen Idec, BioMS Genzyme, Merck Serono, Novartis, Sanofi Aventis and Teva for lectures. was paid travel/accomodation expenses covered or reimbursed by Biogen Idec, Novartis Pharma.
He has also received research funding from Bayer HealthCare, Biogen Idec, Merck Serono, Novartis, Sanofi Aventis and Teva

People on Zamboni's team have taken money from pretty much the exact same list of companies. What does that suggest to you about their integrity?

I know the conflicts of interest from Dr. Hartung. The question is, now that this text above is published in about every german online newspaper, what can be done about that?

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Dr. Thomas Vogl at Frankfurt University needs to speak out regarding his research. Do you have any independent (non-corporate) news sources that might be interested in the opinion of a vascular specialist who understands, diagnoses and treats CCSVI?

Take it to the internet forums--in the US and Canada, this has worked to bring the vascular doctors, IRs and patients together. In the states, we have the Endovascular Forum, a professional website where vascular professionals are sharing their experience with CCSVI. We also have two clinical trials and the Hubbard Foundation IRB approved. The CCSVI Alliance has been instrumental in bringing these to fruition. Find or create a non-for-profit CCSVI research association in Germany. Counter the falsehoods with fact.
don't despair-
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

Thanks cheer for the suggestions.

Dr. Vogl is unlikely to speak out for his research. In fact he treats stenosed jugular veins but tells the patients that he has no clue how this is associated with MS. We've tried a lot with the media, so far with very little success. Germany might be a member of the UIP. Yet, the german chapter tells us that Zamboni's Findings and the existence of the condition is unproven. So do other vascular societies. It seems apart from Dr. Schelling, there's no german-speaking professional that could speak out for CCSVI.

I've written a complaint about the article to the german press council. This is something they take very serious. Creating a non-profit organisation is the next logical step.

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"There is only one good, knowledge, and one evil, ignorance." Socrates