duration of disease not correlated with severity of CCSVI

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

Postby fernando » Thu Nov 25, 2010 8:17 am

Well, "skeptical of everything" mindset is not objective in my opinion. And you are not skeptical of everything as your stance on neck's massage based on two published cases proves otherwise.

I think that you are skeptical about CCSVI only.

But, let's return to the purpose of this thread, to discuss the merits of Simka's presentation.
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Postby Cece » Thu Nov 25, 2010 8:23 am

The blurb does not say but it seems reasonable to assume these findings are from treatments, so it is the gold standard of full catheter venogram.
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Postby concerned » Thu Nov 25, 2010 8:33 am

fernando wrote:Well, "skeptical of everything" mindset is not objective in my opinion. And you are not skeptical of everything as your stance on neck's massage based on two published cases proves otherwise.

I think that you are skeptical about CCSVI only.

But, let's return to the purpose of this thread, to discuss the merits of Simka's presentation.


I really don't have a stance on neck message, just when I've read about IJV thrombosis it was mentioned, so I brought it up.
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Postby drsclafani » Thu Nov 25, 2010 9:44 am

concerned wrote:I don't "believe" that Simka is falsifying data, but just like when drug companies pay to do studies (the results are almost always in favour of the drug, I think something like 95% of the time) compared with independent studies (which usually show much less positive results), I would still like to see an independent study, as Euromedic is pulling in millions of dollars.



I'm sorry Dr. Sclafani, I'm just skeptical of everything.


skepticism is good. of course you are correct but even Mother teresa and Albert Scweizer must have had biases

The problem is that you cannot trust research unless it is a government sponsored trial performed by people who are not consultants for a drug company, who work at a university where their pay is not pegged to what they do; at a university that does not receive any funding from pharma or other commercial interests, where patients are blinded to the treatment and where the none of the members of the editorial board of the journal are consultants for a commercial interest. Wait, government pays the health bills so they have a commercial interest too.

We will just have to analyze critically and skeptically and wait for repetitive validation....and then hope for the best. Because as Dr. Jelenek said, nothing is proven.
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Postby CCSVIhusband » Thu Nov 25, 2010 9:51 am

concerned wrote:I think Simka's results are highly suspect as he makes his living off of CCSVI. I would like to see some independent results.


surprise surprise ... not ever good enough for the 'skeptics'
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Postby Billmeik » Thu Nov 25, 2010 12:01 pm

so at the same ectrims conference 3 or 4 other people presented papers where they found the opposite of this.
Interesting. Maybe its not simka who's fudging data but buffalo et al.

since I am behind dake and his 20/20 1 year mri results I think ms causes ccsvi, so I back simka. All the others must be wrong.
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Postby dreddk » Thu Nov 25, 2010 12:47 pm

Billmeik wrote: I think ms causes ccsvi, so I back simka. All the others must be wrong.


Interestingly Simka concludes that CCSVI does not trigger MS in one of his papers

"Conclusion. Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis."
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Postby Cece » Thu Nov 25, 2010 6:13 pm

dreddk, do you have the link handy for that or the full presentation blurb? I'm not sure what Simka means by that.

Billmeik, I am confused, Dake's 1-year MRI results are reportedly fantastic and free of new MS lesions, which would not be expected from the patients' previous course.

If treating CCSVI is effective at keeping MS lesions from forming, then the logic would be that CCSVI was involved in causing them.

If we were to take it the other way and say MS was causing the CCSVI, we would expect the 1-year results to show the beginnings of new CCSVI malformations in the jugular and azygous.
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Postby Cece » Thu Nov 25, 2010 6:17 pm

drsclafani wrote:
concerned wrote:I don't "believe" that Simka is falsifying data, but just like when drug companies pay to do studies (the results are almost always in favour of the drug, I think something like 95% of the time) compared with independent studies (which usually show much less positive results), I would still like to see an independent study, as Euromedic is pulling in millions of dollars.



I'm sorry Dr. Sclafani, I'm just skeptical of everything.


skepticism is good. of course you are correct but even Mother teresa and Albert Scweizer must have had biases

The problem is that you cannot trust research unless it is a government sponsored trial performed by people who are not consultants for a drug company, who work at a university where their pay is not pegged to what they do; at a university that does not receive any funding from pharma or other commercial interests, where patients are blinded to the treatment and where the none of the members of the editorial board of the journal are consultants for a commercial interest. Wait, government pays the health bills so they have a commercial interest too.

We will just have to analyze critically and skeptically and wait for repetitive validation....and then hope for the best. Because as Dr. Jelenek said, nothing is proven.

concerned, I like what Dr. Sclafani has said here. Dare I hope that this is what it takes for you to pull back from extreme skepticism to slightly less extreme and more palatable skepticism? Either way, Happy Thanksgiving to you and that person with MS whom you love.
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Postby dreddk » Thu Nov 25, 2010 6:20 pm

Hi Cece

Confused me slightly too but I'll dig up the paper for you

D
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Postby dreddk » Thu Nov 25, 2010 6:40 pm

Discussion here http://www.thisisms.com/ftopic-8585-420 ... rasc-.html

Appears he thinks ccsvi causes some symptoms of ms but does not trigger ms. Might need to download the whole paper to understand these thoughts.
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Postby Cece » Thu Nov 25, 2010 6:43 pm

thanks dreddk, I'll check it out
"CORRELATION OF LOCALIZATION AND SEVERITY OF EXTRACRANIAL
VENOUS LESIONS WITH CLINICAL STATUS OF MULTIPLE SCLEROSIS
Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J
EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland.

ABSTRACT:
Background. Chronic cerebrospinal venous insufficiency is suspected to play a role in pathogenesis of multiple sclerosis.

Objective. Assessment of the correlations between patterns of venous lesions and clinical characteristics of multiple sclerosis.

Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.

Results. Venous blockages were found in 97.1% of the patients. Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.

Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis.

Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease."

and also from a Simka paper:
ErikaSlovakia wrote:"Then, we tried to evaluate the correlation between patients’ age and degree of venous lesions. Potentially, this analysis could help in answering the following question: are venous lesions seen in MS patients static, or, on the contrary, they tend to become more severe and
numerous as the patient gets older. We have found that CCSVI abnormalities were more severe in older patients (Fig. 7 and 8). This may mean that these vascular malformations progress. However, this progression is likely to be very slow. It seems that for an average
lesion takes 40 years to gain one point in our scale. Importantly, number of the lesions seemed to be constant. Thus, probably no new lesions develop in an adult patient."
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Postby patientx » Fri Nov 26, 2010 2:55 pm

Cece wrote:dreddk, do you have the link handy for that or the full presentation blurb? I'm not sure what Simka means by that.

Billmeik, I am confused, Dake's 1-year MRI results are reportedly fantastic and free of new MS lesions, which would not be expected from the patients' previous course.

If treating CCSVI is effective at keeping MS lesions from forming, then the logic would be that CCSVI was involved in causing them.

If we were to take it the other way and say MS was causing the CCSVI, we would expect the 1-year results to show the beginnings of new CCSVI malformations in the jugular and azygous.


At least one person reported a new lesion seen on MRI after having been treated by Dr. Dake.

But beyond that, you're leaping to a conclusion based on a very small data set, take over a very short period of time. And at least some of those treated by Dr. Dake were in the secondary progressive stage, when the formation of new lesions is seen less.

I have had 3 MRIs over the last year and a half, and I have had no new brain lesions. Yet, I never had treatment for CCSVI.
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Postby Cece » Fri Nov 26, 2010 3:20 pm

patientx wrote:At least one person reported a new lesion seen on MRI after having been treated by Dr. Dake.

But beyond that, you're leaping to a conclusion based on a very small data set, take over a very short period of time.

Not to mention: unpublished, not peer-reviewed yet, etc.
And at least some of those treated by Dr. Dake were in the secondary progressive stage, when the formation of new lesions is seen less.

I have had 3 MRIs over the last year and a half, and I have had no new brain lesions. Yet, I never had treatment for CCSVI.

You make good points. Can't wait til we have more data on actual treatments. I think it's coming, just never quickly enough.
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