Dr. Ashton Embry, on National MS Societies & CCSVI

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

Postby 1eye » Thu Sep 02, 2010 8:01 pm

Lyon wrote:Show me evidence that Zamboni's 100% and 0% results were achieved by using venous catheter on both those with and without MS and the whole thing will immediately seem plausible to me.= I can assure you, you are wasting your breath.

We both wish it was just me Rokkit, but we both know that the extreme unlikelihood of Zamboni REALLY achieving those results is one of the most damning and universal arguments used against Zamboni's work. I'm sure Zamboni's fans don't like it but industry skepticism isn't and probably shouldn't be restricted to only those particular study results and realistically, as with anyone else's work, should be viewed with a critical eye.


How many digits of accuracy can you have in 65 patients? (answer? 2.) The result you so easily call a lie would be very easy to see even if the error rate were, say 10%, and that corresponds rather nicely with the 90% I have seen elsewhere. In real scientific experimentation the possibility of error is quantified and it does not need a 'Lyon' to see that a 5% or so error rate would only be a small handful of patients, 2 or 3. 2 would be 3%. 3%! Don't give me any guff about 100% and 0%. In a sample size of 65 what would an error of 1 patient be? (answer, 1.5%) When the question has a yes/no answer? With venography... oh I don't want to bother with this imbecilic argument.

There is a double standard here, where theories 'not invented here' or stated in opposition to conventional, wrong-headed thinking, are held to a standard of perfection, where drug trials whose placebo group is better than treatment subjects is blindly accepted as not perfect, but approximate, therefore good enough.

Zamboni's evidence, like all evidence, is subject to error. The important thing is which ballpark he is in. I think I'll attend any game played in this park.
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Postby concerned » Thu Sep 02, 2010 10:03 pm

1eye wrote:
concerned wrote:Is there any charity watch or Better Business Bureau or whatever breakdown of Direct-MS' spending?


Is there any Cynic Watch kind of thing, like snopes, that watches for pack behaviour and listens for "neigh" sounds?


Who exactly exhibits pack behaviour here? I see a whole lot of the "herd mentality" at play but I'm pretty sure I'm not involved in any of it. I don't even know anybody in real life who is skeptical about CCSVI, because I only know a few people who even know what it is. Maybe that'll change with the front page of the SUN today (I don't know anyone who actually reads the sun though) but even in there you can read the same slogans and catch phrases you read on here every day. But yes, five people disagree with hundreds, or even thousands (on this message board), so those five people must just be drones.
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Postby Lyon » Fri Sep 03, 2010 4:58 am

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Last edited by Lyon on Sun Nov 20, 2011 6:33 pm, edited 1 time in total.
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Postby Rokkit » Fri Sep 03, 2010 7:54 am

Given Zamboni's sample size of 65 and an unknown misdiagnosis rate, I've never seen his 100% as implausible. I don't feel like trying to convince anyone otherwise at this point, because I now see the distinction as irrelevant.

There are at least 50 if not 100 IRs worldwide, some publicly and some under the radar, who are finding CCSVI in virtually every MS patient they examine using catheter venogram. One would have to be oblivious to what's going on in the real world not to see that the association does exist. As Dr. Andrews said, it's either real or we're seeing the greatest case of mass hysteria since the Salem witch trials.

At this point, the only people arguing against the association are those with conflicts of interest. Sure, we could spend 2 years doing catheter venograms on 1000 people and give them to radioligists blinded as to diagnosis and see what they come up with, but if you think there's much of a chance at all at this point of that coming up negative, you are really kidding yourself.

I suppose it's possible we haven't looked at enough controls with venogram yet, maybe there's a very significant number of those with the same congenital obstructions. I believe if that were really the case, they would have been encountered by IRs before and some of them would be standing up and yelling about it.

The real issue now is whether treating the obstructions helps anything or not. The can't-be-100% issue has become a red herring.
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Postby bestadmom » Fri Sep 03, 2010 8:25 am

What angers me is how provincial things become as a matter of convenience when shooting down doing CCSVI treatment trials.

We live in a very small world, with instantaneous information sharing capabilities and a global economy. How can any govenment or expert be exploring their options when they won't look beyond their own back yard?

Where is the Kuwait data? I believe the so-called experts advising the Canadian health minister are guilty of collusion and withholding evidence. Are the politicians equally as corrupt and do they think the MS patients are stupid?
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Postby 1eye » Fri Sep 03, 2010 8:29 am

100% may have three digits of accuracy but 65 only has 2. So the most you can say is you know the answer to 2 digits of accuracy. If your answer is 65 / 65 patients, you cannot be wrong by a number less than 1. So your answer cannot be wrong be a ratio less than 1/65. Wrong in the positive direction (say 65 when it should really be 64). Wrong in the negative direction (say 64 when it should really be 65). You cannot know the answer to better than 1/65 accuracy. 2 digits. Regardless of the source of the error. You cannot say you know the answer with accuracy of 1/100 (+/- 1%), when you cannot be wrong by less than +/- 1/65 or +/- 1.5%

Why is this so hard for people who call themselves scientists (amateur or otherwise) to understand? The accuracy of the output is no better than the accuracy of the input. It can never be any more accurate.

All this leads me to believe this apocryphal 100% was never published by Dr. Zamboni (who is a professional scientist). Perhaps comes from some denizen of the Internet, or perhaps some member of the press (though they do have fact-checkers).

This morning I heard a medical (or was it some other kind?) doctor on the radio who said that there had been a venoplasty-related death (I can only assume that was the other adverse event at the same location I have got into so much trouble referring anonymously to in my piece parodying the press).

This person said it had occurred in Philadelphia. He also said that that made the risk 3% somehow. Since the adverse event, over 3000 safe Liberations have been done, making the so-called 'death rate' less that 1/3000, or less than .03%, whichever you prefer. Low in either case; negligible in my 56-year-old case.

Clear?
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Postby scorpion » Fri Sep 03, 2010 1:04 pm

1eye wrote:100% may have three digits of accuracy but 65 only has 2. So the most you can say is you know the answer to 2 digits of accuracy. If your answer is 65 / 65 patients, you cannot be wrong by a number less than 1. So your answer cannot be wrong be a ratio less than 1/65. Wrong in the positive direction (say 65 when it should really be 64). Wrong in the negative direction (say 64 when it should really be 65). You cannot know the answer to better than 1/65 accuracy. 2 digits. Regardless of the source of the error. You cannot say you know the answer with accuracy of 1/100 (+/- 1%), when you cannot be wrong by less than +/- 1/65 or +/- 1.5%

Why is this so hard for people who call themselves scientists (amateur or otherwise) to understand? The accuracy of the output is no better than the accuracy of the input. It can never be any more accurate.

All this leads me to believe this apocryphal 100% was never published by Dr. Zamboni (who is a professional scientist). Perhaps comes from some denizen of the Internet, or perhaps some member of the press (though they do have fact-checkers).

This morning I heard a medical (or was it some other kind?) doctor on the radio who said that there had been a venoplasty-related death (I can only assume that was the other adverse event at the same location I have got into so much trouble referring anonymously to in my piece parodying the press).

This person said it had occurred in Philadelphia. He also said that that made the risk 3% somehow. Since the adverse event, over 3000 safe Liberations have been done, making the so-called 'death rate' less that 1/3000, or less than .03%, whichever you prefer. Low in either case; negligible in my 56-year-old case.

Clear?


Maybe you are right 1 eye. Maybe Zamboni did find that 100% of people had CCSVI. However from what I understand Zamboni's ultrasound techinique is HIGHLY subjective which may mean "beauty is in the eye of beholder. As much as you talk about science you should know that science is based on objective findings. The obvious reason is that when research results are subjective they can be skewed by the BIAS of the researcher.
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Postby TFau » Fri Sep 03, 2010 1:24 pm

"As much as you talk about science you should know that science is based on objective findings. The obvious reason is that when research results are subjective they can be skewed by the BIAS of the researcher."

You might be surprised at how much science is subjective. The subjectivity usually comes in during experiment design and data reporting - choosing what to look at and what to report - but it can also come up in other ways, such as when assumptions made by the scientist restrict his or her observational skills. I worked as a research scientist for almost 10 years in the pharmaceutical discovery area, and have seen and experienced this first hand.

IMHO, clinical trials tend to be over-rationalized so that insurance companies feel okay about funding the drug/treatment for a large number of people and physicians feel justified in prescribing something, even though most drugs to not prove to be greatly effective over placebo. It is not in the sponsor's best interest to "subset" the patients in order to find that segment of patients who benefit greatly over those that don't.
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Postby 1eye » Fri Sep 03, 2010 3:49 pm

scorpion wrote:Maybe you are right 1 eye. Maybe Zamboni did find that 100% of people had CCSVI. However from what I understand Zamboni's ultrasound techinique is HIGHLY subjective which may mean "beauty is in the eye of beholder. As much as you talk about science you should know that science is based on objective findings. The obvious reason is that when research results are subjective they can be skewed by the BIAS of the researcher.


NObody listens. You have taken away the making of my day because you said maybe I was right (then again, why should I care?) and then said it was because maybe he did find 100%... I just finished questioning the thought that a professional scientist like Dr. Zamboni would ever claim 100% on a sample of 65. *I* didn't say he did. I do not know *who* claims he did. I doubt he did.

I think there has been much BIAS shown by the critics of this work. If you had ever seen a catheter venography you would know it is *not* subjective. The people who do not seem to be able to do DUS right, have objective reasons (such as the Valsalva manouver) for failing. Besides, the proof is really in the pudding. Using catheter venography you get to objectively see how abnormal these veins collaterals and valves are. Zamboni's findings are not scientific subtleties. They are joe-the-plumber OBVIOUS to the naked eye. I believe many of them can be seen on this web site. Maybe what is needed is a control group of x-rays showing how normal healthy veins look. A bunch, say 100. So we can see what non-abnormal looks like.

It's way different.
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Postby scorpion » Fri Sep 03, 2010 3:56 pm

1eye wrote:
scorpion wrote:Maybe you are right 1 eye. Maybe Zamboni did find that 100% of people had CCSVI. However from what I understand Zamboni's ultrasound techinique is HIGHLY subjective which may mean "beauty is in the eye of beholder. As much as you talk about science you should know that science is based on objective findings. The obvious reason is that when research results are subjective they can be skewed by the BIAS of the researcher.


NObody listens. You have taken away the making of my day because you said maybe I was right (then again, why should I care?) and then said it was because maybe he did find 100%... I just finished questioning the thought that a professional scientist like Dr. Zamboni would ever claim 100% on a sample of 65. *I* didn't say he did. I do not know *who* claims he did. I doubt he did.

I think there has been much BIAS shown by the critics of this work. If you had ever seen a catheter venography you would know it is *not* subjective. The people who do not seem to be able to do DUS right, have objective reasons (such as the Valsalva manouver) for failing. Besides, the proof is really in the pudding. Using catheter venography you get to objectively see how abnormal these veins collaterals and valves are. Zamboni's findings are not scientific subtleties. They are joe-the-plumber OBVIOUS to the naked eye. I believe many of them can be seen on this web site. Maybe what is needed is a control group of x-rays showing how normal healthy veins look. A bunch, say 100. So we can see what non-abnormal looks like.

It's way different.



You have got to be kidding, right?
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