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Posted: Thu Sep 09, 2010 6:28 am
by Lyon
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Posted: Thu Sep 09, 2010 6:59 am
by Rokkit
Lyon wrote:In fact several times I've admitted that if my wife's MS were more progressive we'd be on the waiting list.
So you do admit that even though there's not enough scientifically rigorous evidence there is at least some compelling evidence? Otherwise your position here would be unreasonable. Or would you also be "drinking grape koolaid under the light of the full moon while hopping on one foot" while waiting on the list?

Posted: Thu Sep 09, 2010 9:22 am
by Lyon
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Posted: Thu Sep 09, 2010 10:06 am
by Rokkit
Lyon wrote:Seriously CCSVI has it all over bee stings, snake venom and Mangosteen juice in the "seems sensible" department but what you and I are bantering about regards our disagreement on what constitutes compelling evidence.
It's clear from your willingness to get on a list that you know there is a lot more compelling evidence supporting CCSVI than hopping on one foot drinking kool-aid, but for some reason you try to equate the two in your arguments. You portray the CCSVI evidence as having no merit, yet your willingness to get on a list demonstrates you don't actually think that. You can't say it's just a matter of being willing to try anything, because there are significant risks associated with treatment (just ask any neurologist). You wouldn't accept those risks if you didn't think there was something to it. Welcome to where a lot of us have been for quite some time.

Posted: Thu Sep 09, 2010 10:29 am
by Lyon
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We control your television set

Posted: Thu Sep 09, 2010 10:35 am
by 1eye
You *vill* be compelled. Und you vill like it!

Posted: Thu Sep 09, 2010 10:43 am
by Rokkit
Lyon wrote:I was overly flippant with the "willing to try anything" statement. What you mention is a hard situation to comment on because "little" things can make so much difference. "IF" the future shows real health benefits to venous angioplasty, that seems woth accepting "considerable" risks.

As things stand, although there may be risks to venous angioplasty we've yet to discover, I don't think the risks we are aware of are off putting enough that would steer us away from the "POSSIBLE" benefits if her MS became aggressive.

I haven't given up hope for CCSVI, but I'm not sure that's the same as my finding "compelling evidence". Again, it "seems sensible" that venous insufficiency would be damaging but we've first got to ascertain that the assumed "insufficiency" really is "insufficient" flow capable of damage and that venous restrictions aren't a fact of life that all humans share.

The average human venous system hasn't been mapped well enough and on a large enough scale for us to say with any confidence that chronic cerebrospinal venous stenosis is really anything out of the ordinary and unique to MS, or damaging.
I like all that, for the most part. To which I reply: fair enough. :D

Posted: Thu Sep 09, 2010 10:48 am
by fogdweller
concerned wrote:It seems one can only detect venous abnormalities properly if one has Zamboni's machine and course, which obviously come at a price. It seems odd that he's offering these things for sale before his theory has been tested and proven.

It sounds like a lot of vested interest to me.
I worry less about the vested interest, and more about the scientific issue, that if the only way to detect the stenoses is to use special techniques and special equipment and special protocol, what is really going on is "creating" an image that looks like a stenoses. Veins are pretty malable, and react to positioning in special ways.

Frankly, I believe in CCSVI and have my own arguments agains this objection, but I would really like to hear what others think about this.

Posted: Thu Sep 09, 2010 11:03 am
by patientx
fogdweller wrote:I worry less about the vested interest, and more about the scientific issue, that if the only way to detect the stenoses is to use special techniques and special equipment and special protocol, what is really going on is "creating" an image that looks like a stenoses.
I don't think you have to worry - it looks like the Mylabvinco ultrasound machine was designed specifically for diagnosing CCSVI:

http://ccsvibg.com/mylabvinco.html
The cooperation have generated a specific Premium Echo Doppler MyLabVinco with unique characteristics and specificities to make the correct diagnosis of CCSVI.
And if you're unsure of the interpretation, it looks like the software will help you out:
CCSVI and VHISS (Venous Hemodynamic Insufficiency Severity Score) analysis, protocol and scoring system

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Posted: Thu Sep 09, 2010 11:06 am
by Lyon
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Posted: Thu Sep 09, 2010 11:32 am
by JCB
I'm tired of thumb twiddling. Tried it, got bored.

This discussion was great and I appreciate everyones input. I think more needs to be learned by all of the "ology" departments. Can't we force them to play together? I think we would learn at a faster pace and with more accurate info. if everyone participated.

Some of us can't and some of us aren't willing to wait for the double blind placebo studies that haven't started. When they do it will be 1 to 5 years before anything is decided.

People with open minds learn when they argue. (I usually learn that I am wrong, so I don't argue with an open mind anymore)

I enjoyed this topic very much.

Posted: Thu Sep 09, 2010 11:45 am
by Lyon
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"The Emperor's New Clothes"

Posted: Thu Sep 09, 2010 1:23 pm
by malden
"The Emperor's New Clothes"

An Emperor who cares for nothing but his wardrobe hires two weavers who promise him the finest suit of clothes from a fabric invisible to anyone who is unfit for his position or "just hopelessly stupid". The Emperor cannot see the cloth himself, but pretends that he can for fear of appearing unfit for his position or stupid; his ministers do the same. When the swindlers report that the suit is finished, they dress him in mime and the Emperor then marches in procession before his subjects. A child in the crowd calls out that the Emperor is wearing nothing at all and the cry is taken up by others. The Emperor cringes, suspecting the assertion is true, but holds himself up proudly and continues the procession.

Hans Christian Andersen, 1837.
"The King is naked!"

...but the swindlers got rich ;)

Posted: Thu Sep 09, 2010 1:43 pm
by 1eye
Yes, the king is naked. Big deal. Don't believe in monarchy, the divine right of kings, or any of that crap.

Never did.

Look, they are really going out on a limb here. Take N 'MS' patients, and N non. See what answer you get. I don't know of any other machine in the world, that promises to diagnose any medical condition.

Hey, where have you *been*? I had thought you weren't coming. The discussion's already very tired. Good luck.

Posted: Thu Sep 09, 2010 2:01 pm
by malden
1eye wrote:...Hey, where have you *been*? I had thought you weren't coming. The discussion's already very tired. Good luck.
...Tx.

I spend summer on the Adriatic island Brac, resting, swimming, eathing sea food, and other ;).

Last week I swim Porec marathon, 3000 m, open sea. I feel goood in water.....no fatigue at all... no overheating.

Best regards,

Mladen.