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PostPosted: Mon May 03, 2010 7:50 am 
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It is surprising that this has still not been posted. According to Jordan university the numbers are 84% of positives in PwMS and 0% in controls.

Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/20351667

Abstract

AIM: The aim of this study is to compare the hemodynamics and the morphology of the internal jugular veins using Colour-Doppler and B-mode sonongraphy in multiple sclerosis patients (MS) and in controls. METHODS: The internal jugular veins of 25 MS patients and 25 controls were examined using colour Doppler and B-mode ultrasound in sitting and supine positions, recording the changes in hemodynamics and the presence or absence of morphological changes. The presence of at least two of the extracranial Zamboni criteria in the same individual was considered positive for evidence of chronic cerebrospinal venous insufficiency (CCSVI). RESULTS: According to the described criteria, 92% of the MS patients showed abnormal findings and 84% of them showed evidence of CCSVI, however; only 24% of controls showed abnormal findings, but none of them showed evidence of CCSVI (OR=7.25, 95% CI 2.92-18.01, P<0.0001). CONCLUSION: Hemodynamic abnormalities and morphological changes involving the internal jugular vein are strongly associated with MS. These findings can be demonstrated by a non-invasive, cost effective Doppler ultrasound criteria.

I would say that the result is quite solid. Now let's see what is the reaction of neurologist.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info


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PostPosted: Mon May 03, 2010 8:02 am 
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They'll say it's from Jordan and that's a 3rd world country and we need to verify the results in a US medical institution ... feet dragging and more feet dragging, as the evidence mounts for the CCSVI side.

It takes a long time to turn a ship ... this ship seems to be turning fast though.

75 years of EAE theory ... CCSVI is only 6 months ... and we're getting there.


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PostPosted: Mon May 03, 2010 8:12 am 
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mshusband wrote:
They'll say it's from Jordan and that's a 3rd world country and we need to verify the results in a US medical institution ... feet dragging and more feet dragging, as the evidence mounts for the CCSVI side.

It takes a long time to turn a ship ... this ship seems to be turning fast though.

75 years of EAE theory ... CCSVI is only 6 months ... and we're getting there.


Exactly... They probably use sticks and stones to operate, they aren't as sophisticated as "our" system.

On a funny note, my neuro said that Poland is probably too backwards to be considered safe for treatments... That is until I told him that I was of Polish descent... He quickly, and embarrassingly changed the subject.

HEY

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PostPosted: Mon May 03, 2010 8:18 am 
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I am wondering, about the criticism of Zamboni's work as not being scientific enough or controlled...would that same criticism be leveled at this? And at the Kuwaiti findings, which I think might just be clinical observations? How can you tell if a study is controlled enough or good enough? Or are these good enough for what they are, which is 'cohort studies' or pilot studies, but it's randomized research trials that are needed?

Regardless of all that, these are great results, they just keep coming!!

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PostPosted: Mon May 03, 2010 8:36 am 
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mshusband wrote:
They'll say it's from Jordan and that's a 3rd world country and we need to verify the results in a US medical institution.


They cannot say that anymore. It has been published in "Int Angiol. 2010 Apr;29(2):115-20". Probably that means "International angiology" and therefore is a publication world-wide peer reviewed. No low quality articles are published in these magazines.

Besides, that would be a clear ad-hominem attack, quite easy to be used against the speaker.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info


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PostPosted: Mon May 03, 2010 8:44 am 
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Frodo, I'm on your side here ... believe me.

BUT we've seen many ad hominem attacks from drug companies and neurologists.


I'm on the side that says you get CCSVI treated by a vascular guy (IR, Vascular, Cardiologist, whatever). SOME may still need a neurologist to deal with the neurological symptoms left over that CCSVI didn't fix.

So I hope everyone out there still keeps their neurologists. Some people are going to need them ... some won't.

So I can see why neurologists are resisting a bit, I think they see people buying into this and saying "screw you neurologist - I don't need you" but the truth is many still will. But they also need the IR, vascular, cardiologist to fix the CCSVI.

In my opinion, some neurologists are right ... I just wish they'd lighten up and say yes go get tested for CCSVI, we'll be here to deal with what's left after you get your veins cleared up - you still need us.


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 Post subject: Blinded?
PostPosted: Mon May 03, 2010 8:46 am 
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Does anyone have a full copy of the paper to tell whether this study was blinded?


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PostPosted: Mon May 03, 2010 10:14 am 
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the 0% on the healthy controls is interesting.
I wonder what poland would get on healthy controls.


I think it should be at least 5%.


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PostPosted: Mon May 03, 2010 9:40 pm 
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We are already at a point where anyone will be hard pressed to argue against the fact that many?, most?, almost all? people with MS also have CCSVI. What the causal relationship exists between them is purely of academic, not clinical, relevance

We might drive that home by paying to have the four people with MS who were not positive for CCSVI when tested with doppler u/s tested using catheter venography, the gold standard for this.

I would posit that they would either turn out to be positive, or it would turn out that their MS is somehow different.

Right now, Buffalo is confounding things with their numbers which I suspect simply reflects the fact that it is hard getting this right, not as is being charged, that Buffalo contradicts Zamboni and therefore this is all up in the air.

At this point it also seems a waste of effort to try to persuade neurologists that CCSVI is relevant. Who cares what they think about a vascular problem? That isn't to say they have no role in treating people with CCSVI in the future, but simply to say that since they have no expertise in vascular problems per se, their views on that subject are not really relevant.

And if they have all kinds of questions in their mind about CCSVI which they think requires years of research, more power to them. Let them study it as much as they want because their views on this are simply not relevant, at least clinically.

They can't argue that impaired cerebrospinal blood flow is okay. And how to deal with that is the only thing clinically relevant to patients. Do I have CCSVI and where can I get it treated. Those are the only questions that need to be answered in the short run.


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PostPosted: Tue May 04, 2010 12:26 am 
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Squeakycat wrote:
We are already at a point where anyone will be hard pressed to argue against the fact that many?, most?, almost all? people with MS also have CCSVI. What the causal relationship exists between them is purely of academic, not clinical, relevance

We might drive that home by paying to have the four people with MS who were not positive for CCSVI when tested with doppler u/s tested using catheter venography, the gold standard for this.

I would posit that they would either turn out to be positive, or it would turn out that their MS is somehow different.

Right now, Buffalo is confounding things with their numbers which I suspect simply reflects the fact that it is hard getting this right, not as is being charged, that Buffalo contradicts Zamboni and therefore this is all up in the air.

At this point it also seems a waste of effort to try to persuade neurologists that CCSVI is relevant. Who cares what they think about a vascular problem? That isn't to say they have no role in treating people with CCSVI in the future, but simply to say that since they have no expertise in vascular problems per se, their views on that subject are not really relevant.

And if they have all kinds of questions in their mind about CCSVI which they think requires years of research, more power to them. Let them study it as much as they want because their views on this are simply not relevant, at least clinically.

They can't argue that impaired cerebrospinal blood flow is okay. And how to deal with that is the only thing clinically relevant to patients. Do I have CCSVI and where can I get it treated. Those are the only questions that need to be answered in the short run.


I agree with you completely. But how do patients, and doctors who want to do the testing and perform the procedure, convince the IRB's that MS should be taken out of the equation and people should be treated on the basis that they have a vascular problem?


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PostPosted: Tue May 04, 2010 1:15 am 
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Maybe they don't even have to be convinced, only slightly pushed to hurry up with their bureaucratic processes? Is it already "not approved" or is it just in review?

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PostPosted: Tue May 04, 2010 9:54 am 
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Trish317 wrote:
I agree with you completely. But how do patients, and doctors who want to do the testing and perform the procedure, convince the IRB's that MS should be taken out of the equation and people should be treated on the basis that they have a vascular problem?


I think that's the rub...the doctors can't really take m.s. out of the equation when they are treating exclusively m.s. patients for this...and the IRB is smart enough to notice this! :)

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PostPosted: Tue May 04, 2010 9:59 am 
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What is going on with Buffalo? I have heard a rumour on another forum that doesn't sound good.

Are they still behind CCSVI?


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