Translated article: MULTIPLE SCLEROSIS: ZAMBONI, AISM TRIAL

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

Postby Cece » Sat Nov 06, 2010 12:23 pm

cah wrote:Cece, perhaps this could be the right address. From the pdf on the aism page:

Anyone interested or would like more information about Studio, you can contact Area AISM Scientific Research at the following telephone number: +390102713410 or e-mail: fism@aism.it Any telephone or sending an e-mail is not intended as adherence to the study, but only as an interest in obtaining more information.

Thanks, cah.
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Postby ThisIsMA » Sat Nov 06, 2010 12:35 pm

Scorpion wrote:
That is because CCSVI is subjective!!!!!


Actually the study clearly shows the opposite, that with training, CCSVI can be found reliably with doppler US, using different ultrasound technicians scanning the same patients, finding the same results. This is the opposite of subjective.
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Re: Translated article: MULTIPLE SCLEROSIS: ZAMBONI, AISM TR

Postby Sotiris » Sat Nov 06, 2010 12:44 pm

scorpion wrote:[...]Hasn't Zamboni documented his "technique"?? If so i would suggest he shares it with investagators, steps back, and let his peers try to validate his intial study. [...]

After reading this translation <shortened url>
(translated from http://www.aism.it/index.aspx?codpage=2 ... iornamenti) I see that he has trained 15 sonologists that may participate in the study. The blinding of the study seems rigorous so maybe Zamboni is following your advice.
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Postby MrSuccess » Sat Nov 06, 2010 12:47 pm

professor Zamboni is 100 % right in insisting that any CCSVI investigation trial and anyone involved ..... should accept his instructions
and methods .

If this is true ..... that Professor Zamboni has drawn a line in the sand ....

then good for him ..... and pwMS.

If the people that have angered Professor Zamboni have half a brain .....
they will quickly come to their senses ..... and do as the master says :idea:

personal attack removed

I think TIMS needs new moderators . :idea:

People come here to read the story of CCSVI ..... what it is ..... who has it ..... what can be done about it ...... who can help them .... where can they seek help .... but most of all .... HOPE .... in finding help .

And our so-called moderators ...... refuse to halt a tiny fraction of TIMS posters ...... from putting forth inflamatory comments that are clearly aimed at anyone who posts solid scientific facts , articles .... or personal experiences .....

Makes you wonder .....

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Re: Translated article: MULTIPLE SCLEROSIS: ZAMBONI, AISM TR

Postby scorpion » Sat Nov 06, 2010 1:19 pm

Sotiris wrote:
scorpion wrote:[...]Hasn't Zamboni documented his "technique"?? If so i would suggest he shares it with investagators, steps back, and let his peers try to validate his intial study. [...]

After reading this translation <shortened url>
(translated from http://www.aism.it/index.aspx?codpage=2 ... iornamenti) I see that he has trained 15 sonologists that may participate in the study. The blinding of the study seems rigorous so maybe Zamboni is following your advice.


That is great news!! Sounds legit to me. I look forward to the results. Mr. Sucess I disagree with you about the moderators. I think they have done a good job moderating what, for whatever reason, is a VERY hot topic. Most of us respect them enough when they ask us to please stop, we stop. I believe what you are looking for is a place that sings the glory of CCSVI. if that is what you want there are plenty of sites i would suggest you sign up for and participate in. Thisisms, I believe, is a place that allows discussion and difference of opinion in ANY of the forums. Yes some things are repeated over and over but I think even that has gotten better. Ok since i am obviousley off topic, as you are Mr. Sucess, and I have said my peace about Zamboni's actions, i will cease posting under this topic!
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Postby ThisIsMA » Sat Nov 06, 2010 1:55 pm

<shortened url>

Foundation Hilarescere learn from the news of the resignation of Prof. Zamboni by the Steering Committee of the Epidemiologic Study IMF.

In his resignation letter, Professor Zamboni says:

"Scientifically, none of the instances that I put forward in the meeting, and subsequent correspondence has gone unanswered. In short, are not strongly convinced of the feasibility study following the compromise of the protocol taught in different way than my other centers found suitable to teaching, the timing required for the preparation of the investigators and the subsequent data collection. Oltrettutto, some colleagues called me, outraged because the teaching sessions in which I was not there, they were clearly put into question the students the principles of the protocol that they would have had to be trained to adequately compare potervicisi. This assessment was shared by Fabrizio Salvi. "
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Postby Lyon » Sat Nov 06, 2010 2:25 pm

.
Last edited by Lyon on Sun Nov 20, 2011 5:27 pm, edited 1 time in total.
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Postby concerned » Sat Nov 06, 2010 3:03 pm

MrSuccess wrote:personal attack removed

I think TIMS needs new moderators . :idea:

People come here to read the story of CCSVI ..... what it is ..... who has it ..... what can be done about it ...... who can help them .... where can they seek help .... but most of all .... HOPE .... in finding help .

And our so-called moderators ...... refuse to halt a tiny fraction of TIMS posters ...... from putting forth inflamatory comments that are clearly aimed at anyone who posts solid scientific facts , articles .... or personal experiences .....

Makes you wonder .....

Mr. Success


Once again, please refer to the rules of the board.
Also, I think the moderators are doing a bang up job.
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Postby Sotiris » Sat Nov 06, 2010 3:24 pm

Google translation of http://www.fondazionehilarescere.org/pd ... 9-2010.PDF
Ferrara, September 9, 2010
Dear Fabio,
in your capacity as President of the Foundation sponsor the Center for Vascular Diseases me direct, I want to express yourself with scientific and organizational push me bitterly that, given these conditions, to resign from the Steering Committee of the Epidemiologic Study IMF.
Were lost several months in discussions with findings inconsistent with the stated goal: to confront linearly with the protocol clearly defined and published by me to assess its veracity. A simple task increasingly serious as time goes by too many compromises.
Scientifically, none of the instances that I put forward in the meeting and subsequent correspondence has gone unanswered, most of the time I have not even had the privilege of a discussion or a reply. In summary, are not strongly convinced of the feasibility study following the compromise of the protocol taught in different way than my other centers found suitable to teaching, the timing required for the preparation of the investigators and the subsequent data collection. Although I perceives that it was necessary to work much more in the training of operators, there has been no willingness to do so or to reduce a huge sample to allow reliable detection at least to the trained operators.
In addition to the failure, clear, detailed comparison with the protocol that you should investigate further motivation for a high risk of failure is the finding that the times of preparation of players is too short compared to their initial state that I have personally check. Now. It would be essential to a long process of meetings in small groups (recall in Ferrara), alternating with periods of self-learning with a tutor at a distance, to implement personal learning curve. The principle is that only one operator on duty is driven provider of an adequate epidemiological data. If it does not provide a reliable epidemiological data it is clear that the epidemiological study has no value.
Besides, with people who believe that the anomalies identified by me fall into the "normal" and have no idea of wanting to investigate more than just what is purpose to get the study, I can appreciate that attitude as an expression of scientific freedom sacrosanct until it becomes detrimental methodologically, eventually crossing the threshold of even ridicule, as evidenced by resignation had produced by the participants' instrumental exacerbation of this attitude.
Some colleagues, in fact, called me outraged because the teaching sessions in which I was not there, they were clearly put into question the students the principles of the protocol that they would have had to be trained to adequately compare potervicisi. You know well, dear Fabio that in such a context the value given the Education ended up being unfairly minimized; a dependent variable from a problem of timing and subjective evaluations negating the very foundations of the protocol that should be compared, but did not do that, a priori.
Alternatively then, to meet the time schedule imposed by the IMF, I suggested ridune the sample to 1000-1500 subjects in place of parting 2400, using only the best operators of record objectively. Although the independent statistical, Dr. Sormani, had clearly indicated that the number of 2400 subjects provided was totally arbitrary (political motivations within a territory?) Because one should not observe any preliminary assessment of power, the Steering Committee has, however, rejected this proposal. Clearly this has an enormous number of tests to be performed only by operators who pass the qualifying exams. In other words there is a risk that instead of 120 subjects they should inquire 250-300 individuals, with a timetable set arbitrarily at the end of the study in June 2011, and inevitable loss of quality. Which prodest?
In addition, planning should devote myself to this study, according to plans drawn up and is not shared by me, such a large number of hours to be hilarious. For education, however inadequate, 150 hours for proficiency testing in 1996, Reading 4500. Something like 5000 hours if you add the meetings of the Steering Committee, and other personnel required at least 500 hours of my property in anything that IMF has offered to implement. It 'obvious that I had made requests to Prof. Battle of minimum investment in terms of my staff at the facility should have, instead, be accepted for at least follow what his office would have taken the research capacity of the Centre. I have never had answers instead, beyond repeated requests for cooperation in order to provide our scientific expertise in the field of CCSVI, unique and valuable. In place of an implementation of personnel through research grants to young people prepared, as I asked in a letter last spring to the IMF, has instead been offered to me and two other investigators experienced a personal check for the readings of the tests peripherally . Something radically different than what I needed in terms of budget for a good organization of research, through a source of continuing education that could be visited by the investigators.
This assessment was shared by Fabrizio Salvi, who was part of the steering committee and also was able to verify that the imposition of the lame pre-established protocol, the incongruous numerosity of the sample related to the timing, with no one to take into account issues relating to 'suitable response methodology in dealing with the protocol which we propose to verify the veracity and importance of training and proper identification of the operators. No response, no chance to change anything to increase the scientific study even for the creator of the know-how and therefore well knows, no willingness to listen and to vary functionally useful as previously decided. Without asking.
With prayer to communicate my position institutionally valid as chairman of the Scientific Committee of the Foundation Hilarescere. I salute you dearly.
Paul
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Postby concerned » Sat Nov 06, 2010 3:27 pm

So, he wanted his people to perform the testing or something?
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Postby jimmylegs » Sat Nov 06, 2010 3:35 pm

there is much more to TIMS than CCSVI, and every TIMS member is encouraged to express their opinion and contribute to the discussion, in accordance with the rules of the forum.
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Postby debp » Sat Nov 06, 2010 4:10 pm

So, he wanted his people to perform the testing or something?


No, he wanted the people who were doing the testing to know what they were looking for. He is claiming that there are venous anomalies in MS patients that are detectable. But in a class to train people that he didn't attend, they were teaching that these anomalies are normal.

Besides, with people who believe that the anomalies identified by me fall into the "normal" and have no idea of wanting to investigate more than just what is purpose to get the study


If the premise is that something is abnormal and when we fix it people feel better, how fair is a study that does screenings that ignore the anomaly or call it normal and then don't try to fix it to see if people actually feel better?
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Postby concerned » Sat Nov 06, 2010 9:04 pm

debp wrote:
So, he wanted his people to perform the testing or something?


No, he wanted the people who were doing the testing to know what they were looking for. He is claiming that there are venous anomalies in MS patients that are detectable. But in a class to train people that he didn't attend, they were teaching that these anomalies are normal.



But if the anomalies are so similar to budd-chiari and may-thurner syndrome, then why couldn't a trained sonographer find that sort of thing on their own?
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Postby ThisIsMA » Sat Nov 06, 2010 10:01 pm

concerned wrote:

But if the anomalies are so similar to budd-chiari and may-thurner syndrome, then why couldn't a trained sonographer find that sort of thing on their own?

I think "trained" is the key word here.

Sonographers who have been trained in the Zambonit protocol can and do find CCSVI on their own. Dr. Zamboni's concern was that the Sonographers were not receiving the proper training.

As far as I know, Dr. Zamboni never intended to do the ultrasound himself in the AISM study. He just wanted to train the technicians who would later be performing the Doppler Ultrasounds. This seems entirely reasonable to me. He invented this new technique, he wants to make sure that others do the technique properly.
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Postby concerned » Sat Nov 06, 2010 10:09 pm

ThisIsMA wrote:concerned wrote:

But if the anomalies are so similar to budd-chiari and may-thurner syndrome, then why couldn't a trained sonographer find that sort of thing on their own?

I think "trained" is the key word here.

Sonographers who have been trained in the Zambonit protocol can and do find CCSVI on their own. Dr. Zamboni's concern was that the Sonographers were not receiving the proper training.

As far as I know, Dr. Zamboni never intended to do the ultrasound himself in the AISM study. He just wanted to train the technicians who would later be performing the Doppler Ultrasounds. This seems entirely reasonable to me. He invented this new technique, he wants to make sure that others do the technique properly.


So I guess sonographers not trained by Zamboni can't detect Budd-Chiari or May-Thurner? I've linked to studies about detecting jugular thrombosis before and before Zamboni those sonographers seemed to have no trouble detecting an occlusion. What makes this different?
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