Buffalo Researchers Display anti-CCSVI Bias

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

Buffalo Researchers Display anti-CCSVI Bias

Postby Direct-MS » Thu Apr 21, 2011 8:40 am

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Postby zap » Thu Apr 21, 2011 9:07 am

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Postby zap » Fri Apr 22, 2011 9:27 am

http://www.buffalonews.com/city/article399578.ece

- the spin on this one made me dizzy.
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Postby Cece » Fri Apr 22, 2011 12:55 pm

“Web sites, blogs, Facebook pages and other social network media promoted the CCSVI theory as salvation for patients with MS,” wrote Drs. Robert J. Fox and Alex Rae-Grant in an editorial that accompanied the UB study. “It became clear that the CCSVI theory went far beyond the traditional clinical research enterprise and had be-come a media- driven phenomenon.”

To be honest, when ccsvi venoplasty works (and I can speak for myself personally on that), salvation is not too strong a word.
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Postby 1eye » Fri Apr 22, 2011 2:15 pm

Salvation from the hands of the devil into the arms of the Lord, mebbe not quite. Liberation? Well, don't knock it till you've tried it. :)

"Oh, the bells of hell go ting-a-ling-a-ling for you but not for me..."
"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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hey...

Postby leetz » Sat Apr 23, 2011 2:20 am

maybe they work for like the MS Society...or a Big Pharma Company? who know's...(smile)..why would they EVER believe that a simple procedure could give PWMS yes I said it People With Multiple Sclerosis that actually have the disease would know what they were feeling or not (pun intended)...SO TIRED OF THE MONEY TOXIC MEDICATION GAME...for me the CCSVI procedure WAS LIKE coming out from under the devil into the good LORD'S arm's...even though my result's only lasted about a month...I KNOW MY BODY BETTER THAN ANY DOCTOR COULD... where is the CURE if they know so much about us? AND IS IT NOT JUST A CO-INK-A-DINK...that when my improvement's faded the before and right after and 3 month doppler were proof enough (just got result's from doppler back and) GUESS WHAT? RE-STENOSIS...this I already knew...why you ask? BECAUSE I KNOW MY BODY BETTER THAN ANY DOCTOR! THAT'S WHY...yes I said that too! NOW...I will sit and wait for IR's to figure out how to safely keep the vein's open...waiting on the Lord's time and not my own...but definately I am not waiting for the Pharma or MS Society to come up with a cure...possibly throwing away even more job's and million's of dollar's...why would they really give that up? huh??? someone??? Errrrhhhh...so frustrated with the one's who think they know...yet know nothing at all........thank you for reading this needed to vent a lil...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Asher » Sat Apr 23, 2011 8:39 am

You do not know your body any better than a doctor or a scientist does, rather in a different way. I am a CCSVI procedure veteran and it has done NOTHING to stop a slow but crippling progression of the disease. So who’s right, you or me, huh??? someone??? Errrrhhhh... Lookup ‘cognitive dissonance’ on Wiki. The answer to some of the responses on this highly emotion and speculation driven forum may reside there.
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maybe..

Postby leetz » Sat Apr 23, 2011 4:16 pm

maybe it was your doctor...maybe we have different form's of the disease no 2 people present the same...YES, I KNOW MY BODY! DO YOU KNOW YOUR'S?
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby leetz » Sat Apr 23, 2011 4:19 pm

and if they knew so much than why are we all still here waiting for a cure? HUH?...they know jack...most of them think they have this disease...that it is their's...well shoot they can have mine cause I don't want it!!!! God Bless U...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: hey...

Postby griff » Sun Apr 24, 2011 3:17 am

leetz wrote: NOW...I will sit and wait for IR's to figure out how to safely keep the vein's open .


I agree. I think it will take a lot of time until we find out whether CCSVI relates to MS in any way or not, but the key is to have a safe procedure that can be done until that happens. Unfortunatelly, there is not too much experience in treating these veins so caution should be well adivised.
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Postby griff » Sun Apr 24, 2011 3:20 am

Asher wrote:You do not know your body any better than a doctor or a scientist does, rather in a different way. I am a CCSVI procedure veteran and it has done NOTHING to stop a slow but crippling progression of the disease. So who’s right, you or me, huh??? someone??? Errrrhhhh... Lookup ‘cognitive dissonance’ on Wiki. The answer to some of the responses on this highly emotion and speculation driven forum may reside there.


I am sorry to hear that. Did you get your veins checked after procedure? Did they get restenosed?
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Postby 1eye » Sun Apr 24, 2011 1:13 pm

from wiki:

Cognitive dissonance is an uncomfortable feeling caused by holding conflicting ideas simultaneously. The theory of cognitive dissonance proposes that people have a motivational drive to reduce dissonance. They do this by changing their attitudes, beliefs, and actions.[2] Dissonance is also reduced by justifying, blaming, and denying. It is one of the most influential and extensively studied theories in social psychology.

Experience can clash with expectations, as, for example, with buyer's remorse following the purchase of an expensive item. In a state of dissonance, people may feel surprise,[2] dread, guilt, anger, or embarrassment. People are biased to think of their choices as correct, despite any contrary evidence. This bias gives dissonance theory its predictive power, shedding light on otherwise puzzling irrational and destructive behavior.

A classical example of this idea (and the origin of the expression "sour grapes") is expressed in the fable The Fox and the Grapes by Aesop (ca. 620–564 BCE). In the story, a fox sees some high-hanging grapes and wishes to eat them. When the fox is unable to think of a way to reach them, he surmises that the grapes are probably not worth eating, as they must not be ripe or that they are sour. This example follows a pattern: one desires something, finds it unattainable, and reduces one's dissonance by criticizing it. Jon Elster calls this pattern "adaptive preference formation."[1]

So I have adapted to the fact that my 'MS' progression has slowed to a snail's pace in some aspects and reversed in others, by claiming that 'that old CCSVI is sour, anyway'?

I'm truly sorry anybody ever has to get anything of this crap disease, and I want everyone to have clear veins. Since all this has been going on I have lost a dear aunt to some mysterious autoimmune muscle-wasting condition treated only by decades of cortisone. She had lousy veins too. I don't know about restenosis yet: that bridge is still before me. I really hope you get treated and fixed up soon. I hope a few things for myself, as well.
"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 leetz » Mon Apr 25, 2011 10:51 am

seem's like we become the doctor/scientist because we just don't have the time...all this wasted research isn't helping us when truth be it the closest they will probably come to a so-called cure is maybe a vaccine...us acutally feeling better who know's... I am a pioneer with CCSVI and was also in a clinical trial for the FDA. Sometime's I think I would try just about anything to feel normal again...and so we keep waiting with no time...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby leetz » Mon Apr 25, 2011 10:54 am

cognitive dissonance...learned about this in school...interesting stuff...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Asher » Mon Apr 25, 2011 2:16 pm

Dear leetz, I have plenty of empathy for your emotion since we are riding the same bus. But this is no reason to be unreasonable. It took humanity 250,000 years to discover quantum physics, so why do you expect scientists to figure out MS on demand? Just because we are suffering? And by the way, it has been established beyond any doubt that MS is an immune modulated disorder. Stem cell transplantation preceded by an immune ablative procedure (HSCT) has shown to be the only possible cure to MS. CCSVI may or may not be correlated to MS. This is yet to be proven, and even then it is ucertain that treating CCSVI will cure MS. The scientists are our only hope, and research is badly needed. Let's not shoot the messenger in our despair. No offense meant in my earlier post. Bless :)
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