Interesting Observation

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

Interesting Observation

Postby Lyon » Fri Dec 18, 2009 5:55 am

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Postby bestadmom » Fri Dec 18, 2009 6:00 am

It is interesting that this woman has started covering CCSVI fairly consistently. I tried several ways to contact her prior to Bologna to see if she wanted to go cover the conference, and didn't hear back.

I guess she's joined the ranks of the converted.
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Postby patientx » Fri Dec 18, 2009 6:47 am

It is interesting that this woman has started covering CCSVI fairly consistently. ....
I guess she's joined the ranks of the converted.


I would hardly say that. This is only her second blog posting on the subject. And in her first article, she ended with:
Let us be hopeful, but let us be rational as we continue to monitor these developments.


Unfortunately, this board has not been too rational lately.
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Postby MS_mama » Fri Dec 18, 2009 8:38 am

bestadmom wrote:
I guess she's joined the ranks of the converted.


I'm as optimistic about CCSVI as anyone--I'm in Dr. Haacke's study and would sign up for Dr. Dake's study if possible, but I don't exactly view CCSVI as a religion. Converted? It's not like there are believers and heathens.... :D
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby patientx » Fri Dec 18, 2009 9:00 am

MS_mama wrote:...but I don't exactly view CCSVI as a religion. Converted? It's not like there are believers and heathens.... :D


Unfortunately, if you read through many of the posts recently, that's what this has become. Just look at how many times the word "believe" is used ("I believe this..", or "We have to get doctors to believe in this..").

And this, despite the fact that all that has really been shown is the association of the venous blockages with MS. Zamboni's recent paper on the neurological results of treatment, in my view, has some noticeable flaws. And his theory on how these blockages might cause MS is just that so far- a theory. No one has shown yet that the reflux caused by these stenoses leads to iron deposition in the brain.
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Postby MS_mama » Fri Dec 18, 2009 10:36 am

patientx wrote:Unfortunately, if you read through many of the posts recently, that's what this has become. Just look at how many times the word "believe" is used ("I believe this..", or "We have to get doctors to believe in this..").

And this, despite the fact that all that has really been shown is the association of the venous blockages with MS. Zamboni's recent paper on the neurological results of treatment, in my view, has some noticeable flaws. And his theory on how these blockages might cause MS is just that so far- a theory. No one has shown yet that the reflux caused by these stenoses leads to iron deposition in the brain.


I agree that the language has become very much an "us" vs "them" mentality. That is why I personally am more focused on getting more research done. I don't present CCSVI information to physicians with an eye on "convincing" them, rather I wish to present the information so that they will want to research it more. It seems, the way this is going, that this will be a prominent part in the future of MS treatment. However, it remains to be seen how much this will pan out in future studies.

What I do not like on the other end is people going out of their way to refute CCSVI on beliefs as well. A doctor saying that "I don't believe that this can be true" is equally dogmatic as someone in the other camp. It's ludicrous for someone to write off an area of research merely because they don't think that it is plausible. That is why cancer research for example, is not moving out of the realm of the standard norm of surgery, chemo, radiation. No one wants to remove their blinders and look in other directions.

At the end of the day, Zamboni's theory will rise or fall on its own merits. More research, more research, more research. That is the point. People debating CCSVI on the internet and being hard core "believers" or hard core "skeptics" won't make a damned bit of difference whether this theory makes its way into mainstream MS treatment or not. What will make the difference is the research that will validate, refute, or refine what Zamboni has done so far.
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Postby ozarkcanoer » Fri Dec 18, 2009 10:47 am

MS_mama,

I agree about the research. But I also "believe" (there is that word again!) that cheerleader and other pioneers on this CCSVI board have made a huge difference by making the doctors and researchers aware of CCSVI. It is not necessarily true that scientific theories rise and/or fall on their own merits. Remember Galileo ? There is a lot of inertia in research. Sometimes research needs a little push to get it going fast and furious. Remember the space program in the 50s and 60s? By golly John F Kennedy said that we would put a man on the moon, and we did !! Cheerleader made the crucial connection between Dr Zamboni to Dr Dake. Cheerleader is a singer not a scientist. And don't forget all the other pioneers who went to Stanford before all the current hoopla. Sometimes things make sense and you need to do something about it.

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Postby ozarkcanoer » Fri Dec 18, 2009 10:51 am

Oh, also remember Darwin ??? LOLOLOLOL Has evolution via natural selection been proven yet ?

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Postby CureIous » Fri Dec 18, 2009 11:02 am

I don't care what label people want to put on anyone else, long as they are talking about it. Not sure when "converted" became equated with "lost all rational thought, capability of thinking". Pretty soon we'll be calling the converted, "fanatics".

Gee, isn't that what the mysterious "they" would want for us to do? Just because one person wants to push one facet of this thing, doesn't negate other facets being totally ignored either. Seems the whole free discussion part is only if it's what we agree should be talked about.

That's called board policing, and it's as old as the internet. Every board I've ever seen goes through ups and downs, "things get out of hand" then are reeled back in to converge on whatever topic the board was initally supposed to do.

I wonder how many people like me, start off a personal discussion about whatever, say trees, and end it with discussing thermodynamics, ?

It's a fine line between iron-fisted control and freedom to think. Sure, anyone can stand aside, come in and take some potshots at opportune times, that's not very impressive at all.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Robnl » Fri Dec 18, 2009 11:07 am

I don't think there is a believe of non-believe issue.
For the first time, MS has been slowed down in patient who's veins were liberated, fact or fiction???
Fact i suppose, as you can contact (also here) people who can tell you that by own experience.

Is CCSVI the MS-killer? Don't think so, more has to be done, think about remyelinisation and maybe more.

No one has shown yet that the reflux caused by these stenoses leads to iron deposition in the brain.

Well, there is iron that deposites in the brain right??
Suppose blood is the most likely transport mechanism, right?
So the thougt that reflux of the drainage veins is responsible for this is not that strange, is it?
But yet it has to be proven, maybe the iron levels in the brain of 'Liberated' people can be checked in a year or so.
Maybe a check on iron level at the starting of a lesion is a good starting point, if iron is there and it it supposed to be drained by the veins.....

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Postby MS_mama » Fri Dec 18, 2009 11:13 am

ozarkcanoer wrote:I agree about the research. But I also "believe" (there is that word again!) that cheerleader and other pioneers on this CCSVI board have made a huge difference by making the doctors and researchers aware of CCSVI.


maybe I was misunderstood, but that was exactly my point. Getting the word out, not necessarily convincing people that CCSVI is "right" is the most important thing at this time, IMO. i.e. Convincing people that it's worth looking into.
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Postby ozarkcanoer » Fri Dec 18, 2009 11:17 am

Robnl... All good observations. The greatest scientists have observed the world as it is and have seen patterns where no one has seen a pattern before. There are a lot of great names of people whose theories were not "proven" by them, but by succeeding generations. I mentioned Galileo, and Darwin. Did Newton prove Newtonian physics ? Of course he didn't prove Newtonian physics because quantum mechanics is really the "right" theory. Or is it ???? Golly I don't know. We could all become philosophers and sit around in a circle and discuss what it is to "know" something... this is called epistemology.

In the meantime, I want some relief for my MS symptoms !!
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Postby Lyon » Fri Dec 18, 2009 11:58 am

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Postby patientx » Fri Dec 18, 2009 1:00 pm

I don't think there is a believe of non-believe issue.
For the first time, MS has been slowed down in patient who's veins were liberated, fact or fiction???
Fact i suppose, as you can contact (also here) people who can tell you that by own experience.


I don't know how this can be considered fact, since there is no currently no biomarker for MS. The only way to measure a treatment's effectiveness is the passage of time - to see if clinical and MRI markers do not get worse and possibly improve. True, good results have been reported by participants here, but trials are usually a little more rigorous. They have objective markers of disability progression, and include blinded reports by a neurologist.


No one has shown yet that the reflux caused by these stenoses leads to iron deposition in the brain.

Well, there is iron that deposites in the brain right??
Suppose blood is the most likely transport mechanism, right?
So the thougt that reflux of the drainage veins is responsible for this is not that strange, is it?
But yet it has to be proven, maybe the iron levels in the brain of 'Liberated' people can be checked in a year or so.
Maybe a check on iron level at the starting of a lesion is a good starting point, if iron is there and it it supposed to be drained by the veins.....


That's exactly my point. It's a feasible theory. But little has been shown to prove that iron is being deposited because of the stenosis. According to Zamboni, the vein stenosis is unique to MS. Yet, iron accumulation in the brain has been shown in other neurological diseases, like Parkinson's and Alzheimer's. Maybe, the iron accumulation results from the death of brain cells, and not direct deposition from the blood.
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Postby ozarkcanoer » Fri Dec 18, 2009 1:28 pm

To quote Dr Zamboni from the CTV W5 documentary :

"Evidence, evidence, evidence".

The "proof" of CCSVI will not be like a mathematical proof. It will be such that the preponderance of the evidence makes it so (or not as the case may be). The CCSVI theory is very compelling to me now, so I pay attention to it. Someone else may be more skeptical. There are probably many neurologists who dismiss it without a thought. We all pick our battles. The role of intuition in science is underrated. If we do not fight any battles then we win no wars. This is the battle that I have chosen. And I am waiting for "Evidence, evidence, evidence", from BNAC, from Dr Haacke, from Stanford, from Italy, from Poland, etc etc etc.

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