Letter to Robert Lizak of Wayne State

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

Postby akaheather » Thu Apr 15, 2010 5:40 pm

(For such an easy read, I am surprised how often you are misread.)
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Postby cheerleader » Thu Apr 15, 2010 6:48 pm

This is just how I see it...I'm no Bob, and I guess that's just gonna be my own personal cross to bear.

I think, if one were an open minded scientist, say, like Dr. Salvi, (the neurologist in Bologna who now works with Dr. Zamboni)....one might look at the evidence presented by this Italian vascular doctor and think, hmmm...maybe this is worth investigating. An inquiring mind can contain two conflicting theories and deal with the dissonance these opposing views create.

What we are seeing-- the very incensed language coming from some neurologists (not all)--is not even the slightest desire to look any further or delve into any dialogue or research. It is an open and shut case. MS is autoimmune. Period. Any other theory is junk science and should be ignored. Just like the letters Dr. Schelling got 30 years ago. No thank you, please just go away.

Now it's time for my Gayle Sheehy/pop psych discourse (Bob, avert your eyes...) I do not think these doctors are doing this because they are bought off by pharma, or evil, or satan's spawn. I believe that they believe so deeply that MS is autoimmune (almost like a religious credo) that to entertain another cognition regarding the aetiology of MS creates so much dissonance, the other theory must be killed. Not examined, or entertained. Just annihilated.

OK. Lucy is done. That will be 5 cents, Charlie Brown--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Thu Apr 15, 2010 6:53 pm

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Postby Billmeik » Thu Apr 15, 2010 8:36 pm

in citing the Prineas and Barnett research which showed no immune activity in fresh lesions--how can Dr. Lisak continue to stick to the auto-immune credo?




ah yes Im remembering now. in 2004 there was rare death from ms. A 14 year old person died and they were able to do an autopsy shortly after. They found no evidence of immune activity. Rather something to do with oligodendricites I can't remember...
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Postby Billmeik » Thu Apr 15, 2010 8:39 pm

oh and I have to agree that cheer's use of 'cognitive dissonance' in a couple of posts did seem a little odd.


So we're talking Maslow I think, definitely psych 100, where a person is conflicted in their opinion. Torn. Experiencing a dilemma. this causes cognitive dissonance.


Knowing cheer she's riffing on some joke...
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Article

Postby FlashHack » Thu Apr 15, 2010 9:25 pm

Billmeik wrote:
in citing the Prineas and Barnett research which showed no immune activity in fresh lesions--how can Dr. Lisak continue to stick to the auto-immune credo?




ah yes Im remembering now. in 2004 there was rare death from ms. A 14 year old person died and they were able to do an autopsy shortly after. They found no evidence of immune activity. Rather something to do with oligodendricites I can't remember...


I believe the artcle referred to was actually published in 2009 and included 11 subjects, not just one. I think this may be it?

http://dl.dropbox.com/0/view/3xxkax8fj0bwy8u/CCSVI/Inflammation%20MS%20not%20Auto-Immune.pdf
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Postby patientx » Fri Apr 16, 2010 7:29 am

You have to admit the general response from the neurological community has been pretty bizarre. When I brought up CCSVI with my neuro last summer I was surprised to be treated with such hostility. (Seriously, one of the nurses was yelling at me in the infusion suite.)


That sounds pretty bad, and if I had nurse yell at me, that'd be the last time I went to that clinic.

But, I don't think it's fair to paint with such a broad stroke, and I don't think the general response from the "neurological community" has been bizarre. Disappointing, maybe, but I think it's in keeping with nature of scientists and human nature in general. When I discussed Zamboni's research with the head neuro at a major research hospital, he was polite, but he just didn't put much stock in it. And he wasn't ready to drop all of the other research going on in the MS clinic in favor of CCSVI.

And I don't see how people can make claims about neurologists in general, and in this particular case, Dr. Lizak. Has anyone actually spoken to him, to judge his "cognitive dissonance," or his unwavering and misguided belief in the autoimmune theory? Granted, in the webcast, he came off as sounding combative. Maybe, that's his normal manner - I don't know. Or maybe there are reasons for him to be upset. Maybe, he's read Prineas and Barnett's paper, and has counter-arguments to their conclusions - like they saw this pattern of lesions in only 14 brain samples.

It'd be interesting to hear his take on these things. But in the meantime, I don't think anyone here has the training in neuroimmunology to say how he's to blinded by his beliefs.

By the way, while we're seeing an increasing number of radiologists show an interest in CCSVI/MS, many are not buying into this. So, it's not just neurologists.
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Human Nature

Postby FlashHack » Fri Apr 16, 2010 7:54 am

I totally agree that this response is completely normal, that is not necessarily an excuse. Many things can be lumped under the heading of "human nature" that we must struggle with and defeat. Sin is crouching at your door, but you must master it.

As doctors, as human beings, dedication to truth should trump all else. What we have seen is dedication to a paradigm that has been pushed for so long that is has become accepted as truth. There are certainly lessons here for us all. As Mark Twain once said, "No life is ever wasted. You can always serve as a bad example."
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Re: Human Nature

Postby sbr487 » Fri Apr 16, 2010 8:57 am

FlashHack wrote:I totally agree that this response is completely normal, that is not necessarily an excuse. Many things can be lumped under the heading of "human nature" that we must struggle with and defeat. Sin is crouching at your door, but you must master it.

As doctors, as human beings, dedication to truth should trump all else. What we have seen is dedication to a paradigm that has been pushed for so long that is has become accepted as truth. There are certainly lessons here for us all. As Mark Twain once said, "No life is ever wasted. You can always serve as a bad example."


You summed up so neatly ... be around ...
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Postby Lyon » Fri Apr 16, 2010 3:14 pm

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A Parallel Universe

Postby FlashHack » Fri Apr 16, 2010 3:50 pm

Lyon:
I'm going to use this opportunity to steer back the thread to the somewhat religious analogy on which it began. This would make you a "CCSVI Agnostic." Cheerleader is a "CCSVI Apologist." We also have A-CCSVIists who deny the existence of the condition (or it's connection with MS).

As for whether the Medical community owes it to us to investigate this, I would say, "Yes!" "Yes," because they are professionals not hobbyists. They have taken a professional oath to serve and protect. They have voluntarily placed themselves in this time honored position, some for money, some for glory, and some out of a true desire to help others.

This is not an academic exercise. There are real lives at stake. If a child were lost in the woods, would we allow the leader of a search and rescue to prevent and discourage people from searching a certain part of the forest because he/she didn't believe the child was there? What if the rest of the forest had already been covered with no results?

Lyon, your layman status leaves you free to remain a CCSVI agnostic. Medical professionals cannot be given that luxury. They must take sides and then work to discover the truth. This is the solemn duty they signed up for and they do not get to sit on the sidelines and simply throw stones.
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Postby tazbo » Fri Apr 16, 2010 4:55 pm

FlashHack, I am impressed by your writing. It is both clever and clear.
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Postby Lyon » Fri Apr 16, 2010 4:57 pm

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Postby jay123 » Fri Apr 16, 2010 6:44 pm

Why does anybody even try to argue with Lyon?
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Postby Lyon » Fri Apr 16, 2010 7:02 pm

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