This Is MS Multiple Sclerosis Community: Knowledge & Support

I just came home from the MS Research day seminar, organised at the Whitechapel Hospital in London by Professor G. Giovannoni. CCSVI was briefly touched upon by one of the speakers, who presented a generally fair overview of Zamboni's research commenting that it is very novel and interesting, only to shoot the theory down a few minutes later based on the preliminary results of a CCSVI trial at Charité, Berlin.

I searched TIMS and did a quick google search on the trial but couldn't find anything, so i post here the information that was presented to us in the seminar. Obviously i haven't seen a research paper or announcement by the team conducting the trial therefore the information below comes with a disclaimer.

According to the speaker, a team in Charité, Berlin has tested 40 PwMS and 10 healthy controls trying to replicate Zamboni's findings of venous malfunction. No information was presented about how the trial was conducted, so i don't know how they defined whether a patient has/has not CCSVI. The trial is still ongoing (so more people are being tested), but in the 40 MS patients tested so far none was found to have CCSVI.

Has anyone heard anything about this trial? Maybe the German members of the board?

I am personally not 100% convinced about CCSVI, i still thought however that the way it was presented today was not objective, which is the minimum i would expect from professionals conducting medical research and whose job is to look for facts. The possibility of false negatives at the Charite trial was not mentioned,nor were the other replicating studies going on at the moment, despite the fact that there was a reference to two deaths in California (surely if you are aware that people 'have died' from performing the surgery you must be aware that researchers outside Italy have also identified the problems Zamboni did?).

I could go on talking about the way CCSVI was presented however i believe there is enough momendum behind the theory so it is almost irrelevant how it is presented by doctors/societies- the truth will pan out quite soon.

By the way the seminar was otherwise very well organised and informative, so i don't mean to undermine the effort put in by the organisers, i am only commenting on the part that had to do with CCSVI and is relevant to this post.

Yannis

Just off the information you gave this can't be an accurate study. In every piece of preliminary and/or unofficial studies someone has had CCSVI (and the minimum number (which wasn't tested correctly) that we have seen is 50%), so to say they tested 40 people and none had CCSVI definitely means something is wrong, whether you believe totally in CCSVI or not.

Ye well what should I say as a German born woman about the Charité in Berlin. Actually they don't know anything substantial about CCSVI in MS, they don’t know how to perform a proper doppler sonography, they don’t work with any protocol of Dr. Zamboni nor Dr. Simka, they don’t try to fix that lack of knowledge and to train their staff but they are not embarrassed to go to the press at first to tell everybody in D that they are to stupid and to arrogant to get informed properly about CCSVI in MS. BTW Prof. Lutz Harms is a neurologist! and the Charité is a “good friend” of the MS-Society in D.
Best
Arne aka muse http://www.csvi-ms.net/en

Here is the article I told you about which is full of false information!
http://www.zeit.de/wissen/2009-12/multi ... e-therapie

Oh well, as if RR MS patients would always remit completely after a relapse (the explanation they give for why they may have felt better after CCSVI intervention = they would have in any case) ! That would be nice...Dream on! The guy that wrote this article has no clue about MS...

Yannis- this isn't possible. Charite was just putting together the study as of LAST WEEK, they were recruiting patients and controls, according to a patient website linked below. I do not see how they can have results yet. Jacobs is doing a 1600 person study for over six months now, and the preliminary data comes out in two weeks.

Aside from this, there is no official publication. Charite just finished up a huge study on EGCG, and that took over three years. I have a hard time believing they can bring down the CCSVI theory in one week.

Please, before we start rumors, can we cite research or official press releases? At least link to sources. Thanks.

link

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thanks, Cheer. Anyone got an Enigma machine?

.

Joan-The information was presented by a neurologist associated with Charite, in front an audience of several doctors and 150-200 MS patients and relatives/friends, i believe other TIMS members were probably present and can attest to this. I wouldn't classify this as a 'rumor' and i certainly didn't 'start' it,i mentioned specifically what was discussed and asked if anyone knew anything more about this trial.

Having said that I expressed my sceptisicm about what i heard in my previous post, and i was actually disappointed by the clear anti-CCSVI bias of the presentation, however i still think that sharing this is of interest to the members of the forum.

Sorry, Yannis...didn't mean to shoot the messenger. Just surprised they could say something so conclusively after one week of testing. Apologies.

Wonder if the Charite docs realize the terrific anti-oxidant, iron chelating, BBB crossing benefits of the EGCG (green tea) they've been touting? Within the CCSVI paradigm, it sure makes sense as to why they've been seeing good results in their tests with MSers.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I think lots of rumours amongst the neurologists are surfacing.

This will amuse you...I went to my GP who is also a neuro and I dropped off my scans of the venogram for him to look at.

He said he would look over them with another neuro. and said "I have heard about this CCSVI not sure if I buy into it" So I started chatting to him about Zamboni and then he piped up "what does a psychatrist know about the vascular system"?(referring to Zamboni
I then explained that he was a vascular specialist.
He then said "well he has only tested this theory on his wife so that doesn't stand for much!" I then had to let him know about the trials that had be done.

It will worry you to know that this GP/Neuro is a close friend of my top neuro (an MS specialist) and another top neuro both advisors to the UK MS society. They apparantly have discussed CCSVI at length!!

I have to keep setting my neuro straight as he keeps coming out with these false figures of people dying from operations for CCSVI and making up stuff!!

Ok so you don't believe it but at least do a bit of research and get the facts right!!!! How can I take these GP/Neuros seriously now???

So to end my long winded post, I am sure the neuros at the convention did make reference to a German study but have probably got their facts wrong!!

NO RUMOR - I am grateful for all your post. I would like to say one thing. In December I had a lengthy conversation with a top MS Specialist. In fact, he was heavily involved in the Bologne Conference.

In December he told me their were two deaths so far. I corrected him and said, there were none. A lady died in Phoenix after stents, but the Drs. said it was not related. And one person had a problem with a stent slipping that required open heart surgery.

He replied and was very serious, "There were two deaths, I talk to a lot of people all over the world involved." His whole take on CCSVI, was that a lot more testing needs to be done and that he was a lot more optimistic about drugs that block Lingo 1. Because they may allow for remylenation.

hmm I have come to understand that its possible to look at MS patients and find no ccsvi.Almost everyone who gets the imaging and operation successfully has some false negative tests in their past.
But even with no training they should get about 10%. I've come to think that the bad replications are all by arrogant workers who don't do the basic reading, don't have the equipment, and are really out of line for presenting their bad fact finding as science.

hmm I have come to understand that its possible to look at MS patients and find no ccsvi.Almost everyone who gets the imaging and operation successfully has some false negative tests in their past.
But even with no training they should get about 10%. I've come to think that the bad replications are all by arrogant workers who don't do the basic reading, don't have the equipment, and are really out of line for presenting their bad fact finding as science.

That’s it what I did try to say!
Best
Arne http:/www.csvi-ms.net/en

Sadly, before my MS diagnosis, I used to have some respect for most doctors. But now with all these doctors proclaiming about something they know NOTHING about I am getting more angry and frightened by the medical profession. I can understand skepticism, but to talk so ignorantly about something that may be help for people suffering is just inhumane. I honestly don't understand it. Even in the remote chance that CCSVI is a blind alley, I just don't understand it. Every possible chance for a treatment for MS should be considered... not mocked. And CCSVI has published papers to give it much validity. We haven't got long to wait now for the Buffalo results. THEN what will these ignorant doctors say.

ozarkcanoer