CCSVI conference

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

Postby scorpion » Mon Oct 25, 2010 5:07 pm

vivavie wrote:Et Vlan!
Good job debp!
I read that to! Dr Salvi being a neuro he did not became a believer just for Dr Z good look (!?!) but yet it will never be enough for "some"...


With some of the horrible things happening to people after surgery and all the money the liberation procedure costs whatever Dr. Salvi claims should not be enough for anyone. I can not speak for the other "skeptics" but if Dr. Zamboni can identify the people who have MS as opposed to those that do not, I will readily admit that there is some type of association between MS and CCSVI.
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Postby vivavie » Mon Oct 25, 2010 5:13 pm

Zut! I let myself down, I swore I would not fall into these useless exchanges with _, _ and _. They feed on it.
shame on me but still good job debp!!!
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Postby 1eye » Mon Oct 25, 2010 5:30 pm

concerned wrote:You should have specified that you meant "the assumption of dishonesty and the presumption of either incompetence or lying" in the context of Zamboni et al., because I think you all like to do that very same thing towards the "non-believers", and furthermore find such behavior commendable.


Please do not make generalizations about what I like to do or find commendable. You might make a mistake and be right, but I doubt it.

scorpion wrote:1eye I would think you would be begging for this type of study to be completed to quiet the "skeptics"


And you would be mistaken. I would rather see an attempt to reproduce the finding of 38% reduction in gadolinium-enhancing lesions, for which no blinding or placebo procedures are necessary.

I would also like to see a paper written on Ms. Farrel's case, to reveal why she was close to death, and what was done to enable her to return home. I am not afraid of medical details.

Some skeptics will never be quiet.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Lyon » Mon Oct 25, 2010 5:39 pm

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Postby Cece » Mon Oct 25, 2010 5:41 pm

1eye wrote:I would also like to see a paper written on Ms. Farrel's case, to reveal why she was close to death, and what was done to enable her to return home.

That would make a good case study and a good political lightning rod, both.
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Postby scorpion » Mon Oct 25, 2010 5:45 pm

Lyon wrote:
scorpion wrote:I can not speak for the other "skeptics" but if Dr. Zamboni can identify the people who have MS as opposed to those that do not, I will readily admit that there is some type of association between MS and CCSVI.
As skeptics commenting on an MS internet site none of us (of course) can speak for what the majority of "organized medicine" would consider acceptable proof, although it seems that they are calling for no less than the most accurate testing possible, and that seems nearly unanimously considered to be venous catheter.

Me personally? For what little it's worth I've called all along for equal testing between controls and those with MS
using the most accurate testing available to us and at this point that seems to be venous catheter. Invasive, yes, but there is no avoiding the fact that inaccurate tests lead to inaccurate results and all of us have read of plenty false positives and negatives with all the other testing methods.

It might not be popular, but the only way to distance CCSVI from it's "Ouija board" testing reputation is to do equal and accurate (within our ability) testing on those with and without MS. From what I've seen it's uncontested that venous catheter is the most accurate test available at this time.


Oh no. I feel a copyright infringement lawsuit in the making!
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Postby Lyon » Mon Oct 25, 2010 5:57 pm

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Postby bigfoot14 » Tue Oct 26, 2010 7:32 am

Lyon wrote:
It might not be popular, but the only way to distance CCSVI from it's "Ouija board" testing reputation is to do equal and accurate (within our ability) testing on those with and without MS. From what I've seen it's uncontested that venous catheter is the most accurate test available at this time.


I think that the closest we will get to the standard you are asking for is the trial in Albany where 2/3 get treated & 1/3 get "sham" treatments

this of course is not perfect because they are not testing "normals"....

if it helped in the research, I would volenteer to be one of the normals tested
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Postby patientx » Tue Oct 26, 2010 7:55 am

1eye wrote:I would rather see an attempt to reproduce the finding of 38% reduction in gadolinium-enhancing lesions, for which no blinding or placebo procedures are necessary.

Almost any clinical trial on CCSVI would involve MRI measures, hence the need for clinical trials.

Zamboni did not report a 38% reduction in Gd-enhancing lesions. He reported that the number of patients with enhancing lesions was 50% pre-treatment, and 12% post-treatment. This can be very misleading. For example, it's possible that the 12% post-treatment consisted entirely of patients who did not have enhancing lesions pre-treatment. This would mean the treatment was ineffective.

The authors of the paper themselves warned against reading too much into their MRI results:
This favorable neurologic outcome was also confirmed by the significant reduction in Gad lesions on the 1-year MRI; however, our open-label design requires caution in evaluating this finding. MRI was not always performed with the same instrument, followed the same protocol, or was at the same intervals.
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Postby PCakes » Tue Oct 26, 2010 8:10 am

http://www.falsecreekdiagnostics.com/cc ... low-study/

I do not know if this study is blinded. I do know that the study is underway and that they are/were very particular with their choice of 'healthy' controls. No blood relatives. No known cardiovascular issues. A friend was graciously rejected, as a healthy candidate, due to PAD.
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Postby Cece » Tue Oct 26, 2010 8:38 am

patientx wrote:Almost any clinical trial on CCSVI would involve MRI measures, hence the need for clinical trials.

The FDA wants it measured by clinical indicators, not MRI. I think.
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Postby patientx » Tue Oct 26, 2010 9:35 am

Cece wrote:
patientx wrote:Almost any clinical trial on CCSVI would involve MRI measures, hence the need for clinical trials.

The FDA wants it measured by clinical indicators, not MRI. I think.


This is why I wrote would involve MRI measures (probably a better wording is "would include"). I didn't mean that MRI results should be the primary endpoint. Of course, any treatment trial of CCSVI should focus on clinical measures (as do almost all MS treatment trials).

I don't think this is a matter for the FDA, anyway. As I understand it, the FDA regulates drugs and medical devices, not procedures.
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Postby scorpion » Tue Oct 26, 2010 10:24 am

PCakes wrote:http://www.falsecreekdiagnostics.com/ccsvi-ms-studies/ccsvi-blood-flow-study/

I do not know if this study is blinded. I do know that the study is underway and that they are/were very particular with their choice of 'healthy' controls. No blood relatives. No known cardiovascular issues. A friend was graciously rejected, as a healthy candidate, due to PAD.


Good find PCakes. I am glad to see these trials taking place. I guess we will be getting some answers soon
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Postby Lyon » Tue Oct 26, 2010 1:43 pm

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Postby Cece » Tue Oct 26, 2010 1:51 pm

patientx wrote:I don't think this is a matter for the FDA, anyway. As I understand it, the FDA regulates drugs and medical devices, not procedures.

Dr. Siskin canceled a patient appointment because of an FDA meeting and then Dr. Sclafani separately brought up the FDA in his thread...my spidey sense is tingling but nothing known. The FDA does regulate the use of stents.
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