a supposed "debate"

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

Postby NotSoSick » Fri Apr 16, 2010 4:47 am

I know this doc is blasting Zamboni, but his "opening discussion" has a lot of misrepresentation/false info, can we comment on this?

1. He says PP didn't benefit from the treatment: I assume he means because there wasn't some kind of sudden halting of all symptoms in all cases. I was under the impression that PP DID benefit, even if that just means that some people only feel more "energetic."
2. He says SP didn't benefit from the treatment: see above.
3. He says people in the study "fell back to baseline". I guess he means restenosis, since I don't know where this statement is coming from. They did NOT fall back to baseline that I am aware of.
4. MOST IMPORTANTLY: He says there was no impact on relapse rate. Where on earth is he getting this? I was under the impression that it DID effect relapse rate, AND MRI.

Is this just a neurologist getting onto a show and lying through his teeth or what??? I know he is spinning, but sheesh!
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Postby sbr487 » Fri Apr 16, 2010 5:09 am

Highlights:

1) Have you seen any neuro supporting this - Stewart (I have omitted Dr by intention, pls note)
2) How many healthy controls have CCSVI - Stewart (look how a research which was so closely funded by MS patients is being used by neuro community against us)
3) I would not oppose if someone decides to try horse manure if that helps - Stewart
4) How can some vascular guy touch MS (something similar) - Stewart

He almost says that MS should not be researched by anyone other than neuros. It is pure territory protection that is going on. I thought only dogs do that ...
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Postby cah » Fri Apr 16, 2010 5:30 am

I'd say a big part of the problem is that this show was extremely poorly designed. You cannot, by all means, explain AND debate this topic within a few minutes. Moreover, it is absolutely unfair to put one side in the studio and the other on the phone. Dr. Stewart could use his hands and facial expressions while talking. Dr. Godley only had his Voice, distorted by phone. It was a logical consequence that he had to raise his voice, making him sound hysterical. The third big mistake was that the Anti-Theory was heard first and then the Theory. That's just very bad style of debating and can only lead to heated argument. The channel should be ashamed of broadcasting this!
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Billmeik » Fri Apr 16, 2010 6:52 am

now we have 2 debates from Canada...this one and the one between zamboni and freedman. This one was more shrill. When I think about it puting a telegenic lifeguard neuro from the jock school of debating (where h who speaks loudest and interrupts the most wins) is a strong sign of insecurity on the neuro community's part. They are battling with intangibles when they used to think science was enough.
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Postby cheerleader » Fri Apr 16, 2010 7:10 am

NotSoSick wrote:I know this doc is blasting Zamboni, but his "opening discussion" has a lot of misrepresentation/false info, can we comment on this?

1. He says PP didn't benefit from the treatment: I assume he means because there wasn't some kind of sudden halting of all symptoms in all cases. I was under the impression that PP DID benefit, even if that just means that some people only feel more "energetic."
2. He says SP didn't benefit from the treatment: see above.
3. He says people in the study "fell back to baseline". I guess he means restenosis, since I don't know where this statement is coming from. They did NOT fall back to baseline that I am aware of.
4. MOST IMPORTANTLY: He says there was no impact on relapse rate. Where on earth is he getting this? I was under the impression that it DID effect relapse rate, AND MRI.

Is this just a neurologist getting onto a show and lying through his teeth or what??? I know he is spinning, but sheesh!


1- 2 QOL= Quality of life was improved for PPMS and SPMS. Progression had stopped to the 18 month retesting of the progressive patients treated. There will be updated numbers on these patients coming, now that another year has passed. I met some of the progressive patients in Bologna, and they spoke passionately of their improvements and halting of progression.

3. No falling back to baseline...if there was an exacerbation, it was due to restenosis. Dr. Zamboni redid the angioplasty and the flares went away in 4 hours to 4 days.

4.The relapse rate was based on restenosis...all RRMS whose veins remained patent, remained relapse free.

all of this information, plus the REAL numbers is available in this paper:
link

all of Dr. Zamboni's papers can be found here:
http://www.fondazionehilarescere.org/en ... zioni.html

we can counter falsehoods with numbers and facts.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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I give up!

Postby BELOU » Fri Apr 16, 2010 7:47 am

I guess I'm giving up watching and listening all interviews with neuros. Honestly, I can't take no more and I need a break. I know nothing in medecine but I'm able to recognize people with big EGOs and all the people (neuros) that I see these days have quite a big one.

I have been working in R&D for the last 12 years and I can tell you that if people in my R&D team would have had such big egos, We would not have been able to achieve anything. I remember something I've learned from an old engineer, "Build from the ideas of others, that's the key parameter to solve a problem. I guess Neuro researchers should be aware of that, no?

Thanks everyone here for not giving up talking about CCSVI and bringing the facts.
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Re: I give up!

Postby sbr487 » Fri Apr 16, 2010 7:51 am

BELOU wrote:I guess I'm giving up watching and listening all interviews with neuros. Honestly, I can't take no more and I need a break. I know nothing in medecine but I'm able to recognize people with big EGOs and all the people (neuros) that I see these days have quite a big one.

I have been working in R&D for the last 12 years and I can tell you that if people in my R&D team would have had such big egos, We would not have been able to achieve anything. I remember something I've learned from an old engineer, "Build from the ideas of others, that's the key parameter to solve a problem. I guess Neuro researchers should be aware of that, no?

Thanks everyone here for not giving up talking about CCSVI and bringing the facts.


Exactly. My irritation is the way they oppose. Highly subjective. No real facts. Just it is wrong, wrong. Good education also teaches how to accept outside and new ideas. These guys are completely closed their doors.
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Re: I give up!

Postby BELOU » Fri Apr 16, 2010 7:58 am

[/quote]
Good education also teaches how to accept outside and new ideas. These guys are completely closed their doors.[/quote]

And they thrown the key inside the ocean full of sharks :wink:
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Postby AMcG » Fri Apr 16, 2010 11:15 am

I watched this and was appalled both by the very poor behaviour of Bradley Stewart and the dreadful format and poor management of the whole thing. That is leaving aside the the persistent factual errors and unjustified assertions Dr B made. Being in the UK perhaps I should not comment. But in the UK programs are supposed to be factual, fair and balanced. This program clearly failed on all three. If I was Canadian I would complain to the broadcasters using Joan's rebuttal above which (as usual) is correct and verifiable. They should at least apologize and perhaps give Dr Godley a proper chance to have his say on camera.
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Postby happydance » Fri Apr 16, 2010 11:42 am

That close minded attitude of his was one of a few reasons why I fired Dr. Stewart over a year ago. He's like that with other things not just CCSVI.
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Postby 1eye » Fri Apr 16, 2010 7:12 pm

"Currently, it is grossly irresponsible to offer plasty to anyone until the relationship between stenosis and MS is established."

This statement is pure rubbish. He is not qualified to make this statement in the least. I wonder how a real phlebologist, or a cardiologist, would react if someone tried to tell them that. Do some people believe that their emotional, scientific, or financial investment in "MS" is more important than anything else that can possibly go wrong? I wonder how many of the millions who have had angioplasty and survived heart attacks would react. This so-called doctor thinks we should all believe: "If it *is* broke, don't fix it?" That is grossly irresponsible, and not supported by a single fact. We have heard slants, spins, and outright lies. When is a neurologist (besides Dr. Zivadinov) going to appear in public and be brave enough not to spew the same lies and half-truths, designed to scare patients, and make conservative doctors, association executives, and surgeons back away from their chosen turf?

Well, I say, if it is broke, and I can't get it fixed because of a lot of hysterical, hydrophobic, hyped-up, well-paid paranoids, who can't shut up, and use whatever power and influence they have to prevent sick people from getting a surgery, so simple the surgeons don't even call it surgery, and I die, I will make sure in my will to say exactly where blame lies. And it will not be easy to forget.

Hey you say it won't affect my MS. Thank you for your concern, but I can make my own decisions about the rest of my body. Stick to what you know something about, and don't call up one of your cronies and quote some bafflegab at me to try to make it look like you know something about phlebology or cardiology.

You know what I think the problem is? They're *afraid* of all these cured people walking around. I think the "plasties" should go ahead. Fix all the PPMS first. Then fix all the RRMS people, and CIS and other stragglers. Then think about the SPMS.

Another thing they might be afraid of, is if all these CCSVI cases get *treated*, well the supply of test subjects might dwindle. We can't have that. What about Science? Well, if you guys need a test subject, and if you can get one, you'll let these young mothers and other innocents get treated, then *I* *volunteer*. Test me. I can take it.

I got a belated reply to my email to this strident propagandist:

Sorry to have disappointed you, <addressee's name>. I will await the ongoing studies in Canada and the US.

I sincerely hope that you can find some type of effective treatment.

[signed]

This was followed by a long legal-looking "disclaimer", which I suppose allows easy disavowal of the contents, and tries to get you not to quote it. The disclaimer ended with "Thank you."

to which I replied:

No need to thank me, I'm just glad I could be of help.

I've got to get an appointment to get "some type of effective treatment" for my neurologist-induced madness. BTW Dr. Cameron treated my mother-in-law as part of the CIA's project MK-Ultra. If only he were here, what would he say? ...Maybe some cannabinoids. :wink:
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Postby PCakes » Fri Apr 16, 2010 8:04 pm

Correcting misrepresentation of the truth is the most important job we all have. I am slowly learning this from all of you. "The high road" as my mom always told me. oooh she would have had some elegantly presented 'choice' words for this man.
For those of you who lead with knowledge and grace...Cheerleader et al.. I will shush so you can be heard..
I do want to thank dr stewart for the gift of laughter when he said "how dare you say that Dr Godley.. YOU take that back!!" ....I know you are but what am I.... :lol:
Dr Godley.. you are a good man... thank you
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Postby MrSuccess » Fri Apr 16, 2010 8:35 pm

what a pathetic hatchet job this interview presented.

Dr. Godley was fantastic ...... well spoken and polite.

On the other side ....Stewart was a disgrace . :twisted:

Might I suggest this interview be repeated :idea: ...but moderated in a more professional manner :idea: . Talk about one sided . :evil:

And don't get me started on the comment from the peanut gallery by a so-called respected ms doctor. Respectable people don't interact this way.

As usual ....our dear Dr. Zamboni has shone bright once again :!:



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Postby costumenastional » Sat Apr 17, 2010 1:45 am

You can all read my "discussion" with him under the tag :Brad Stewart"
Keep going people.
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Flyers from shared Solutions

Postby BELOU » Sat Apr 17, 2010 5:54 pm

This is weird but I just received sharedsolutions (Copaxone) flyer talking about new drugs, injection sites and blablabla and at the end guess what? They talk about our Italian dude, Dr.Z. WOW! But soon after they quote Yves Savoie from MSs saying 'stay on your drugs!'. Funny :wink:
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