CCSVI vs auto-immune

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

Postby ozarkcanoer » Sun Sep 19, 2010 7:54 am

I hate to get too political here, but the diagrams from the "teacher" on this video remind me a whole lot of Glenn Beck.

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Postby scorpion » Sun Sep 19, 2010 8:02 am

ozarkcanoer wrote:I hate to get too political here, but the diagrams from the "teacher" on this video remind me a whole lot of Glenn Beck.

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:lol:
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Postby Lyon » Sun Sep 19, 2010 8:04 am

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Postby erinc14 » Sun Sep 19, 2010 8:21 am

ozarkcanoer wrote:CCSVI according to Dr Zamboni himself is NOT in conflict with the autoimmune hypothesis of MS. Everyone should watch the CTV W5 documentary over and over, especially the interviews with Dr Zamboni. It is a great disservice to Dr Zamboni not to listen to him and remember what he says. "Of course MS is autoimmune. We have proof !!!". It makes me a bit angry that people forget everything Dr Z has said. Someone should post some more myths about CCSVI. We should listen to Dr Zamboni, not some youtube video. This is NOT us vs them !!!! This video is scientifically worthless.

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EXACTLY !

Liberation therapy not called a MS Cure

http://www.ottawacitizen.com/health/Lib ... story.html
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Postby 1eye » Sun Sep 19, 2010 10:04 am

Yes, the You-tube video is scientifically worthless. Yes we who have a stake in our own personal health, should watch the W5 episode and listen to Dr. Zamboni say this is not a cure. We should manage our own expectations. While we do that, a lot of ordinary individuals see the kerfuffle around the Liberation procedure, and come away thinking a lot of bizarre things. A propaganda war is being fought here, and there are excellent propagandists selling the latest story to buyers of newspapers, watchers of TV, and listeners to radio. The latest story is often designed to distract people from what is actually happening.

This U-Tube video: people who have not already made up their minds will, mainly, not even see it. But other people see things. They don't think much about them at the time. They repeat them, thinking the authority is good enough, and they read them in the paper, so they must be true. People use them in unrelated arguments. And these attempted facts acquire a life of their own, independant of veracity or accuracy.

Today in the Ottawa Citizen Kelly Egan said "As Sam (the woman the story was about, who went to Mexico to get Liberated) points out, it is neurologists themselves, not witch doctors, who are building the case for scientific credibility." Then, immediately, a quotation. Leading you to believe it was Sam who said it: "We see it as one more potential tool in the arsenal to fight this disease."

But there is nothing that actually *says* Sam said it. Did Sam really say it? It sounds to me like something a neurologist would say. So there is no direct quote from Sam saying what she is supposed to have said, and an unattributed direct quote that does not sound like something Sam would have said. Sounds like rats abandoning ship. Both statements are liable to be believed, and repeated. That's how propaganda works. But it hardly jibes with what we have recently heard from on high at the neurology conference in Germany, does it? Doesn't it sound to you as if, far from building any case for scientific credibility, many prominent neurologists are (vainly, but loudly) trying to build a case *against* the scientific credibility of Liberation? It would be nice if General Practitioners would end the madness, and start sending 'MS'/CCSVI patients for a new first-line treatment, a simple vascular procedure, and let the chips fall where they may.

It would be nice if Canadian IRs and vascular surgeons asserted their mandate to help sick people get better.

That may be the intent of the woman in the video. It is only doctors themselves who can do this, no matter how pretty her diagrams are. Only doctors themselves who can start thinking of medicine as an art again, compatible with it being a science too. Without the support of the general doctor, all the pronouncements of the Health Ministry, the CIHR, the MS Society, the neurologists, the drug czars, and the IRs, are chaff in the wind.

This procedure does not need a national, gazebo-controlled, blinkered study. It needs a set of bona fide documented practises, a qualification that someone can hang on their wall, and some muscle behind it.

Lives are at stake. Why are people still arguing about witch doctors, quackery, and miracle work?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby rainer » Sun Sep 19, 2010 10:06 am

ozarkcanoer wrote:I hate to get too political here, but the diagrams from the "teacher" on this video remind me a whole lot of Glenn Beck.

ozarkcanoer


I almost said the same. Beck uses a lot of the same techniques. Misleading over simplifications of your opponent. And suggestions of a conspiracy to reinforce the viewers feelings of being a victim.
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Postby ozarkcanoer » Sun Sep 19, 2010 10:57 am

I've had the CCSVI procedure, so maybe I have some right to play devil's advocate here. Historically in science when an unusual hypothesis is presented, many scientists in the same field do their darnedest to prove the hypothesis false. That is part of the job of a scientist. Max Planck didn't even believe his own results on the quantization of energy : "I was so sceptical of the universality of Boltzmann's entropy law that I spent years trying to explain my results in a less revolutionary way." e=hf, where h is Planck's constant. I'm not claiming the German CCSVI studies have any legs to stand on, but they are not wrong for trying to prove CCSVI. In the end Professor Zamboni's hypothesis will stand or fall based on scientific trials.

The issue of whether patients should be allowed to have the Liberation procedure or not should be a separate issue from whether there is any validity to the CCSVI/MS hypothesis or not. Again that is what Dr Zamboni has said. He calls for large scale trials of the CCSVI hypothesis at the same time as compassionate treatment should be allowed. Dr Zamboni's studies must be considered pilot studies. The German study should be regarded as junk science... what does it really say.

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Postby Lyon » Sun Sep 19, 2010 1:01 pm

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Postby ozarkcanoer » Sun Sep 19, 2010 5:23 pm

Lyon,

I am calling the German study "junk science" again based on my own experience. I was imaged at BNAC and only my right IJV was found to be stenosed. When I had the procedure Dr H discovered I had both IJVs stenosed (plus my azygous). I also sent Dr Haacke my MRI/MRV from Buffalo. Just this Friday he sent me a report showing his analysis of the Buffalo MRI/MRV (I sent him a copy of my DVD from Buffalo). His analysis shows both IJVs narrowed, with the left IJV narrowed and the right IJV severely stenosed. My dopplers from BNAC show only the right IJV narrowed. Who do I really believe? Three completely independent and highly qualified sources show three different results.

How can I believe the results of the German study as far as stenosis and/or malformations are concerned ? I'm with Dr Sclafani. We need more research in discovering how best to detect these problems. Otherwise how can you believe ANY imaging studies, either BNAC or the Germans or anybody else for that matter ? If the Germans don't understand this and were willing to publish results on imaging that may be prone to huge errors due to poorly understood techniques, then I call that junk science.

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Postby patientx » Sun Sep 19, 2010 6:23 pm

he Germans don't understand this and were willing to publish results on imaging that may be prone to huge errors due to poorly understood techniques, then I call that junk science.

With all due respect, then you should call what the doctors at BNAC did "junk science." Or for that matter, you should call what Zamboni's team did "junk science." Remember, Dr. Zamboni's team found the 100%/0 correlation based on his ultrasound criteria. The team at Buffalo didn't find anywhere near this correlation, but they found a correlation, so their results have been deemed credible. The German team found no correlation, so it's been determined they don't know what they are doing - even though many of those who participated in the study were referenced by Zamboni himself.

Regardless, it seems the consensus is that ultrasound is pretty much useless for detecting CCSVI, and that catheter venography is the final word. Yet, no one, other than Zamboni in his one study, has attempted to show that jugular or azygous stenoses are more prevalent in people with MS vs healthy people.
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Postby Lyon » Sun Sep 19, 2010 6:27 pm

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Postby ozarkcanoer » Sun Sep 19, 2010 7:34 pm

Hmmmm... "would have" and "should have". "would have" yes but "should have" no. "Should have" means a value judgement, and that is unscientific. Albert Einstein shouldn't have theorized on the nature of space and time because he was just a patent office clerk ? Do you have to have a PHD in neurology to hypothesize on the nature of a disease ? There seems to be an idea that one must go up the proper scientific ranks to be anointed worthy of speculating on just about anything. That smacks a bit of Aristotle, that there be an elite raised and educated to govern the people. It took me quite a while after my MS diagnosis to understand what is NOT known about MS. I certainly don't know if CCSVI is the answer. But where is the proof of the autoimmune model ? I want to know what causes MS, I want a chart mapping out the whole process, from the genes to the lesions to the symptoms. I want every immune system signal or mis-signal to be displayed... the beginning of a lesion, it's lifetime and how it produces symptoms. How much of this can you find on the NMSS website today. Not much. The idea that it is the immune system going awry due to genetics or viruses, etc etc is hypothesis. No proof. Maybe the immune system is just fine and it is reacting as it "should" (sorry) due to some unknown trigger is just as valid an idea.

Does anybody really believe that stem cell treatment will treat symptoms ? Or myeling repair in the near future ? Both worthy subjects of research no doubt. I have no hope from either of these. Some very good doctors and scientists have deemed CCSVI worthy of study. I could rant all night so excuse me.

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Postby Cece » Sun Sep 19, 2010 8:36 pm

Lyon wrote:Sorry, didn't see your earlier post PX. Kinda covering the same ground. Well, at least I guess that proves that you and I aren't the same person.

Unless that's just what you want us to think.... :)
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