AAN, chickens and eggs

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

AAN, chickens and eggs

Postby cheerleader » Sat Apr 16, 2011 8:59 am

As the neuros bid a fond farewell to Honolulu, and the press delights in the controversy-now regarding causality, rather than the existance of CCSVI- I thought it might be a good idea to discuss how MS could cause CCSVI.

If MS comes first, then why do some people in the normal population have CCSVI? How did they get it if they don't have MS??

If MS comes first, then why are doctors finding congenital truncular venous malformations in people with CCSVI? Why are they finding webs, septum, upside down valves? How could MS create these congenital malformations?

If MS comes first, how does it make a vein disappear?

If MS comes first, then why did Dr. Dake find CCSVI in a woman whose Mom had MS? He diagnosed her with CCSVI before she ever got an MS diagnosis. Dr. Zivadinov did the same thing....he tested a daughter of a woman with MS in the Buffalo study. She was in the "normal" group. She had CCSVI and developed MS months later. Why?

If MS comes first, it would be the only vascular disease created by an unknown, incurable autoimmune illness. Budd-Chiari, a venous disease of the liver, starts with venous obstruction which leads to liver damage. May-Thurner, the disease of the legs, starts with a venous obstruction. All other diseases of venous congestion begin with a venous obstruction. As a matter of fact, they all have the EXACT same venous malformations being found in CCSVI.

If MS comes first, then why are other researchers studying neurodegenerative diseases finding links to the vascular system? In recent years, Alzheimers, dementia, Parkinsons are all being looked at as potential diseases of impeded cerebral bloodflow.

If MS comes first, then why does the immune system act the same way in other neurovascular disease? Why do t-cells attack myelin basic protein in the same manner in stroke, dementia, and other ischemic events in the brain? What would make MS so unusual that it could activate the immune system and create congenital venous malformations, as well?

The truth is, there is no plausible explanation for how MS could cause CCSVI. Ask a vascular doctor....they'll tell you they've never seen anything like it in any other venous disease.

Ockham's Razor comes to mind---it is a principle that generally recommends selecting the competing hypothesis that makes the fewest new assumptions, when the hypotheses are equal in other respects Accepting that MS causes CCSVI makes too many new assumptions that are not compatible with the current, known research.


And the most recent research out of BNAC...the first paper of the angioplasty study, found CCSVI in pwMS was related to truncular venous malformations in every patient. Webs, septum, inverted valves, agenesis...these are the same congenital venous malformations found in Budd-Chiari and May-Thurner, and they are present at birth. MS does not cause these venous diseases....here's the paper:

link to new BNAC research

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Postby cheerleader » Sat Apr 16, 2011 9:41 am

Here's is Dr. Sandy McDonald's reply to the BNAC press:

The role of CCSVI in multiple sclerosis remains unclear. A very heated debate has polarized the medical and patient communities. The recent press release from Dr. R Zivadinov and associates has only lead to further confusion. The University of Buffalo study does however answer one important question: is CCSVI clearly associated with MS? This study showed that 55% of MS patients studied have CCSVI. 22% of healthy controls also have CCSVI. It should be noted that some first degree relatives were part of the normal group -there is a trend for MS to run in families- so using family members as controls was not optimal. That notwithstanding the study clearly demonstrates an association between CCVSI and MS. Several other authors have found evidence of CCSVI in upwards of 90% of MS patients tested.

The Buffalo study also shows that patients with Clinically Isolated Syndrome (patients that have had only one MS episode) have a 38% incidence of CCSVI, those with more advanced MS have an incidence of 80% incidence of CCSVI. It seems reasonable to conclude from the data that CCSVI when present can lead to a much more progressive form of MS. The study however fails to determine if treating the CCSVI component will have any effect on the progression of the MS symptoms.

The supposition that the venous anomalies may be caused by MS is difficult to understand. Recent work by Dr. BB Lee at Georgetown University clearly shows that the origin of CCSVI is congenital (in utero) and is not caused by environmental insults occurring after birth or the MS disease process itself.

Data presented by Dr. M Mehta in March 2011 assessed the effect of treating CCSVI with balloon angioplasty. He reported a significant improvement in the quality life score post treatment with angioplasty. Other research by Dr.'s K Mandato and G Siskin looked at the safety of using balloon angioplasty in the treatment of CCSVI-they documented a very low complication rate. These studies taken together suggest that balloon angioplasty is safe and can indeed improve the quality of life in patients suffering from MS--(shouldn't that be our goal).

Clearly more research is required to determine whether treating patients with CCSVI (using balloon angioplasty) will have a beneficial effect on the quality of life in those people suffering from MS.

Some people with rapidly progressive MS have no treatment option available-should these individuals be offered balloon angioplasty on a compassionate basis? The suicide rate in the MS population is much higher than the national average. Approximately 400 patients die from the complications of MS annually.

In light of this information a well designed research trial using balloon angioplasty as treatment for CCSVI should be conducted in Canada.

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Postby WeWillBeatMS » Sat Apr 16, 2011 10:03 am

hey cheer, just wondering who the first quote is from?

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Postby cheerleader » Sat Apr 16, 2011 10:20 am

WeWillBeatMS wrote:hey cheer, just wondering who the first quote is from?

WeWillBeatMS


that's me on Facebook....CCSVI in MS
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Re: AAN, chickens and eggs

Postby frodo » Sat Apr 16, 2011 11:47 am

cheerleader wrote:As the neuros bid a fond farewell to Honolulu, and the press delights in the controversy-now regarding causality, rather than the existance of CCSVI- I thought it might be a good idea to discuss how MS could cause CCSVI.


Before discussing how MS could cause CCSVI maybe we should agree in what MS is. Several definitions exists and they define different conditions. Is MS the presence of lesions? is MS the underlying condition that causes the lesions? is MS the clinical condition defined by McDonald criteria?

There is no agreement in this point and it should be established before entering a serious discussion.
Last edited by frodo on Sun Apr 17, 2011 2:07 pm, edited 2 times in total.
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Postby orion98665 » Sat Apr 16, 2011 9:43 pm

Thank you once again Cheer!!
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Postby cheerleader » Mon Apr 18, 2011 10:42 pm

Great article on chickens and eggs in Macleans---The Rorshach Test of CCSVI research

Of course, the chicken-egg conundrum gives rise to endless speculation. For instance: If CCSVI is the result, rather than the cause of MS, then why did 22 per cent of the control group have it? The fact that the control group in the Zivadinov study included front-line relatives of MS patients raises another set of questions given genetic predisposition to the disease.

Meanwhile, the study itself has become a Rorschach test, read differently depending on bias. Barrie, Ont. vascular surgeon Sandy McDonald, an advocate of CCSVI treatment, says it answers two important questions: “One, is CCSVI associated with MS? Answer: yes. Two, is CCSVI a contributing agent in the progression of the diseases? Answer: yes.” McDonald says the relationship in the presence of CCSVI in advanced MS (in more than 80 per cent of cases), suggests the condition may contribute to the disease’s progression. Not everyone agrees. Halifax neurologist Jock Murray, a vocal critic of the CCSVI hypothesis, told the CBC it suggests CCSVI is a “normal variation” and not even an actual condition. The two polarized takes on CCSVI are nicely summed up in this video.


http://www2.macleans.ca/2011/04/18/the- ... -research/
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Postby Mathd » Tue Apr 19, 2011 5:47 am

at the chickens and eggs, I have the answer:
the Eggs

Dinosaurs were laying Eggs way before any chickens!!
samething with CCSVI,
Veins were a problem way before MS, but no one seem to notice before zamboni!!
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Postby Rokkit » Tue Apr 19, 2011 6:10 am

It also found that far more patients with advanced MS—some 80 percent—had CCSVI, which suggests “CCSVI may be a consequence rather than a cause of MS.”

I'm not understanding why it is assumed MS has to be the driver here. If MS and CCSVI are indeed correlated in this way, why is it not possible that CCSVI is the thing that is progressing with "advanced MS" being secondary to that?
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Postby Cece » Tue Apr 19, 2011 7:01 am

Rokkit wrote:
It also found that far more patients with advanced MS—some 80 percent—had CCSVI, which suggests “CCSVI may be a consequence rather than a cause of MS.”

I'm not understanding why it is assumed MS has to be the driver here. If MS and CCSVI are indeed correlated in this way, why is it not possible that CCSVI is the thing that is progressing with "advanced MS" being secondary to that?

We even have some of the knowledge in place to explain why CCSVI would be progressive. (Hypoxia affecting the veins as well, all the turbulence affecting the veins, aging itself affecting the veins!)
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Postby gauchito » Wed Apr 20, 2011 4:04 am

An MS sufferer cannot, among other things, have the privilige of not paying attention. The high propensity of "the estasblishment" to formulating a medical problem under "the chicken and egg frame" came to light in ACTRIMS meeting in Toronto in 2008. By that time they stated: "Neurodegeneration or inflamation, wich one comes first".
Interestingly, they persist in using the same frame but now updating the characters of the movie: "MS or CCSVI...."
This is a very convenient professional frame if you want to gain time and keep the "status quo" when a potential thread to "business as usual" life rises on the horizon. Simply because humankind has never advanced knowledge and subsequent change by using that formula.
As we, pw MS, do not want to keep "status quo" we shouldn´t accept that paralyzing frame. So here it goes this story;
Our body is a beautiful garden. One day we wake up and surprinsingly find a chicken and an egg. Of course we do not know what to do an decide to meditate which one came first in order to perform the right solving actions. As we entertain our philosophical games we realize that that the chicken put an egg, and it turn, original egg gave place to a new chcken. So now we have 2 chickens and one egg. At this stage we quickly understand that it is time to postpone the puzzle game and ACT or our beautiful garden will soon become a garden with MS otherwise.
So the action is: regardless elderness of chicken and egg we have to elImlnate BOTH as much as we can as soon as possible
Then we will have time to sit dow and while peacefully contemplating our beautiful garden, get back to this incredibly intriguing puzzle.
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Postby 1eye » Wed Apr 20, 2011 8:38 am

The other possibility is that a mockingbird or snake will get the egg and a sneaky predator of some other kind will get the chicken. You may end up a very hungry meditator if you don't defer philosophising about it, at least until you are done cooking.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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I maintain

Postby Gordon » Thu Apr 21, 2011 7:07 am

I maintain that CCSVI and Iron overload combine to produce MS. These two combined with time cause MS, possibly the others, parkinsons etc.

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Postby HappyPoet » Thu Apr 21, 2011 10:01 am

cheerleader, check your PMs.
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Postby cheerleader » Thu Apr 21, 2011 11:25 am

Dr. Zamboni and the Fondazione Hilarescere respond to the BNAC press release:
basic points--
It is too soon to say MS creates CCSVI--as CCSVI may very well be causative of MS since is being found in children and CIS.
This BNAC release was based on research from 2009, already discussed ad infinitum in 2010, which has since been improved upon. It is not new.
The media is not reporting the true story.

PRESS RELEASE
Some clarification of inaccurate information disseminated in the media, in particular the April references to the study of Dr. Zivadinov published in Neurology.

CCSVI has every right to be considered among the causative factors of MS, having been seen in 60% of pediatric forms of MS

The published data had already been released in 2010 and then considered unsupported data.
The study conducted by researchers at the University of Buffalo and published in Neurology, the journal of the American Academy of Neurology April 13, 2011. ( www.neurology.org ), the relationship between CCSVI and MS, is attracting a lot of noise, but the news needs to be clarified.
And that is that the study disproves the theory of the relationship between MS and CCSVI, emphasizing the fact that MS is not a cause but a consequence of MS.

The study published in Neurology, confirms the results of last spring, in fact the study and the data contained in it are the same as advertised by a press release in spring 2010 and defined data unsupported.
The data coincide with those presented April 14 at the 2010 Live Web Forum in Toronto, organized by a National MS Society and attended by Prof Paolo Zamboni, director of the Vascular Disease Center, University of Ferrara and discoverer of CSSVI, Dr .Zivadinov Robert University of Buffalo, Dr. Andrew Common, radiologist at St. Michael's Hospital University of Toronto, and Dr.Aaron Miller, professor of Neurology and Director of the MS Center at Mount Sinai in New York. During the live web forum, broadcast live on 5 continents by doctors and patients, and these four experts in the room that scientists had considered the study of Buffalo as a confirmatory study, data analysis and indeed led to state CCSVI that was also a negative prognostic factor in the course of MS.

We must therefore read the data in a different light.
The data emerging from the study by Professor Zivadinov, does not detract from the work of Professor Zamboni, but contrary to what is erroneously reported by other media sources. The data instead strongly supports that CCSVI has every right to be included in the idea of multifactor accepted by all scientists, including the causative factor of MS having found in nearly 60% of pediatric forms of MS and in almost 40% of people with clinically isolated syndrome (CIS). Obviously it is difficult to consider the CCSVI a consequence of MS even when it is presents in pediatric MS.
Press office: Rossini Francesca Manfredini - Laboratory of Words

Translated from original Italian

http://ccsvi-sm.org/?q=node%2F854


HP---our website has moved to www.ccsvi.org
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