Debunking the latest study ‘debunking’ CCSVI

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Debunking the latest study ‘debunking’ CCSVI

Postby Cece » Tue Aug 20, 2013 12:49 pm

http://www2.macleans.ca/2013/08/16/debu ... ing-ccsvi/

Interesting comments again by Dr. Trabalousee.
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby MrSuccess » Tue Aug 20, 2013 9:21 pm

Here is how I see it. I put little or no importance on any study on CCSVI that HAS NOT included applying the medical procedure .

For example : One day you find the water in your house acting unusual. Your toilet won't flush properly . The hot water tank seems slow to provide heat. Little water at the taps to wash your dishes.

You suspect a problem with your well.

You call a guy out. He takes a ladder and descends down deep into the well to check things out. He comes back up and tells you have some problem with a pluged pipe.

Another "expert" arrives. He just looks down the well , with his flash light , from the top. He does not go down the ladder.He assures the homeowner that he indeed DOES see water in the well . So the problem is in your hotwater tank , toilet , and sink.

He wants to replace all three. [ DMD's ] Wants you to ignore the guy that went down the ladder deep into the well. And he is .... not to be believed.

I can't explain CCSVI ...... any easier. I don't take expert advice from guy's at the top of the well ...... armed with only a flash light. I trust the other guy .

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Re: Debunking the latest study ‘debunking’ CCSVI

Postby 1eye » Tue Aug 20, 2013 10:32 pm

It's hard to trust your life to those who can only do the bidding of drug manufacturers.

I don't want to limit my skepticism to those who say something can be done, and sometimes I am also skeptical of those who say it can't. In some languages it's easier to say no than yes, and vice versa in others. Whether you are right or not depends on the truth, not on who you are.

Sometimes things that are not profitable to say are still true, and sometimes things that are profitable to say are still false.

Dream big, even if you are limited to daydreams. They come true, sometimes, too.

And life, as they say, depends on the liver. :smile:
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby Cece » Tue Aug 20, 2013 11:01 pm

1eye wrote:And life, as they say, depends on the liver. :smile:

And also the spleen.
:smile:
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby erinc14 » Wed Aug 21, 2013 7:36 am

"It is difficult to get a man to understand something, when his salary depends on his not understanding it.”

upton Sinclair
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby MrSuccess » Wed Aug 21, 2013 1:56 pm

There is TALK and there is ACTION. Perhaps someone in contact with Dr.Traboulsee can point out that Dr.Zamboni's original 65 pwMS study of CCSVI ..... INCLUDED .... all people in his study getting the medical procedure . ALL of them. And then again on those deemed to have re-stenosed. A-C-T-I-O-N .

The Hamilton study mentioned by Dr.Traboulsee was ALL TALK. No vein explorations.

Therefore ..... Apples to Oranges.

Dr.Zamboni's study of pwMS having CCSVI .... is certainly NOT too good to be true. On Dr.Zamboni's team is a Neurologist. No doubt the source of the people getting into the study group.[ Dr.Silvi ]

Had Dr.Zamboni meerly walked down the street , asking 65 RANDOM people to take part of his study ....... THEN ........ you might claim " too good ... to be true ".

I , as well as Dr.Zamboni , welcome other medical professionals to duplicate both his findings and RESULTS. New research MUST be Talk and Action.Not just talk.

The Hamilton study ..... is worthless. I loathe " coat tailers ". :twisted:


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Re: Debunking the latest study ‘debunking’ CCSVI

Postby Cece » Wed Aug 21, 2013 3:57 pm

MrSuccess wrote:There is TALK and there is ACTION. Perhaps someone in contact with Dr.Traboulsee can point out that Dr.Zamboni's original 65 pwMS study of CCSVI ..... INCLUDED .... all people in his study getting the medical procedure . ALL of them. And then again on those deemed to have re-stenosed. A-C-T-I-O-N .

At least in Dr. Traboulsee's trial, all patients will get the procedure. One group gets it right away, one group gets sham and then a year later gets the procedure. However I don't think there is any action plan for what to do about restenosis (and/or vein injury and underdilatation misdiagnosed as restenosis.)
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby MrSuccess » Wed Aug 21, 2013 4:47 pm

It's a start. I am actually very surprised that Dr.T's study , involves the procedure. I guess all that work to prove SAFETY .... has paid off. Hats off to those that ran that leg of the CCSVI relay.

Next up .... and MOST IMPORTANT OF ALL .... is to get solid information about the BENEFITS of CCSVI procedure. We think it's 33-33-33 at present.

Is the goal improvements of MS symptoms ? That's the end game.

I look forward to the day diagnosis is quickly and accurately achieved. Next day, the procedure . And all done for under 3 K. That's my wish.


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Re: Debunking the latest study ‘debunking’ CCSVI

Postby 1eye » Wed Aug 21, 2013 6:37 pm

Many papers, some e-published ahead of print, and others already printed, have investigated, discussed, and advocated for the use of IVUS in CCSVI treatment. Its validity and superiority over conventional fluoroscopic catheter venography for CCSVI investigations is well documented. It should be part of standard treatment for CCSVI, after screening methods have been accepted. Is Dr. Traboulsee going to even attempt to use it in his randomized studies?
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby Cece » Wed Aug 21, 2013 8:27 pm

I haven't heard anything that would lead me to believe Dr. Trabalousee is using IVUS.

Diagnosis, procedure next day, as MrSuccess says...and covered under insurance, with the evidence to back it up. I believe we need two randomized controlled trials supporting the treatment of CCSVI as beneficial either in MS patients or simply in CCSVI patients. We need the physics equations supporting the existence of CCSVI as an abnormality and not a normal variant.

Ack, I'm getting worked up. In fairness, when Dr. Trabalousee was designing his study, there was not as much published about the merits of IVUS in CCSVI as there is today.
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby MrSuccess » Wed Aug 21, 2013 9:04 pm

IVUS certainly sounds like the answer. At the rate we are advancing , IVUS , might be a 'buggy whip ' this time next year.

The early stages of CCSVI have been subjected to fairly restrictive financing.

I'm absolutely certain the Zamboni 65 study .... was low budget. The things Dr.Zamboni could do with unlimited Euro's ....... sigh . We can only wish.

The road block " Is it safe ? " , has been overcome. Let's not forget that hard battle.

The pioneer CCSVI medical professionals really took a public beating - proving - the safety of the procedure. I'm pouring a cocktail down my throat in their honor. Salute!

I'm prepared to let Dr.T proceed as best he can. Within , no doubt , a tight budget.


My wish list is that Dr.Hubbard recieves ALL the CCSVI material .... ALL the studies , and then puts together the first large CCSV Trial. Wouldn't that be nice ? :idea:


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Re: Debunking the latest study ‘debunking’ CCSVI

Postby Hooch » Thu Aug 22, 2013 6:58 am

In all fairness Cece not as much had been published about using IVUS back in 2010 but I asked for it when I was treated by Dr Siskin in Sep. 2010, meaning we certainly knew about it here (from Dr Sclafani I believe). I was told that it was expensive and not necessary (I was disappointed) and I think it is still not used in his practice in Albany.

On a slightly different subject I believe that my husband was a control in the Ian Rodger's study at McMaster's in Hamilton. At the time we thought the study was being run by Dr Mark Haacke and it included MRI (not MRV) but I believe Dr Haacke didn't have anything to do with it in the end as when I spoke to him in Nov. 2011 he seemed to be surprised by my question. My husband has received no feedback and they said that would be the case unless they found anything abnormal.
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby 1eye » Thu Aug 22, 2013 2:06 pm

Hooch wrote:In all fairness Cece not as much had been published about using IVUS back in 2010 but I asked for it when I was treated by Dr Siskin in Sep. 2010, meaning we certainly knew about it here (from Dr Sclafani I believe). I was told that it was expensive and not necessary (I was disappointed) and I think it is still not used in his practice in Albany.

On a slightly different subject I believe that my husband was a control in the Ian Rodger's study at McMaster's in Hamilton. At the time we thought the study was being run by Dr Mark Haacke and it included MRI (not MRV) but I believe Dr Haacke didn't have anything to do with it in the end as when I spoke to him in Nov. 2011 he seemed to be surprised by my question. My husband has received no feedback and they said that would be the case unless they found anything abnormal.


It may be slightly different for me because of my citizenship. I believe it is part of the ethics of informed consent in a clinical trial, to give the patient access to as much information as possible, that has any conceivable relevance, as and when that information becomes available.

Consent and relevant information, I think, include changes to the design or changes to the personnel in a trial if they become necessary. I think they include any new information bearing on the trial's methods, current, planned, amended, etc. Also I think they include reasons for early termination. I would be surprised if they did not cover a subject's access to all the data collected about themselves, or about the patient's own health status, if new information about it is learned in the study.

Being informed does not end when the patient signs the consent form. It requires the active, ongoing, intentional participation of the investigator, to protect the human subjects.

Many scientists and doctors would consider continuing to use methods that are inferior to other, well-known ones, to be acting in bad faith. The patients may want to be informed of the existence of new improvements. Financial or other costs of new improvements may be worth the effort of changing a study's design. The practice of only comparing a treatment to placebo, and not to existing first-line treatments, is suspicious medicine to me.

The relationship of CCSVI with 'MS', and even its existence, in and out of the 'MS context, continue to be questioned. It is to be hoped this is not done intentionally, to confuse assessment of the PTA procedure's efficacy.

The principle of due diligence, in my belief, applies. The professionals involved have been adamant, in publicizing deaths that have any relation, even coincidental, to the proposed treatment. I think of this diligence as a debt owed to those who have died in the effort to improve the lot of their fellow "MS" sufferers.

That the study was already designed or planned, does not influence matters. When harm is a possible consequence, plans can and do change. In my opinion, they should also change when there is evidence of an improvement that can be reasonably applied, or an offer of assistance with improvements has been made. If standards are recommended by international consensus, many studies may be affected.

In this area, much contention has occurred. If the price of agreement with interested parties is unnecessary progression of the disease, is it too high?

There has been a marked lack of co-operation between some of the participants in this research.

I think we are still a long way from an inexpensive alternative to DMDs, steroids, and other existing treatments for 'MS', if only because of the momentum of their requisite revenue streams.
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby brocktoon » Mon Sep 16, 2013 11:47 am

Another big problem with this study is that the MS group is not separated in any way, which hinders the ability to analyze the data properly. Our group has already replicated the bar graph with our recent MRI flow findings and we have observed similar findings to the Rodger paper, but when the MS group is separated into stenotic and non-stenotic subgroups, we see lower IJV flow in the stenotic group compared to the controls and non-stenotic MS groups. We still have to work on the statistics for the data set though and hope to have a paper on it within a few months.
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Re: Debunking the latest study ‘debunking’ CCSVI

Postby Cece » Mon Sep 16, 2013 7:58 pm

brocktoon wrote:Another big problem with this study is that the MS group is not separated in any way, which hinders the ability to analyze the data properly. Our group has already replicated the bar graph with our recent MRI flow findings and we have observed similar findings to the Rodger paper, but when the MS group is separated into stenotic and non-stenotic subgroups, we see lower IJV flow in the stenotic group compared to the controls and non-stenotic MS groups. We still have to work on the statistics for the data set though and hope to have a paper on it within a few months.

I am not sure I accept the concept that there is a non-stenotic MS group.
Dr. Trabbalousee recently said that they are seeing about 70% of MS patients as stenotic, meaning that 30% are nonstenotic, and Dr. Sclafani suggested that 70% was about what he sees with catheter venogram but that the rest are also stenotic when viewed with ivus.

So then the subgroups & estimated percentages would be
a) MS group with stenoses of long duration that have thickened to the point that they are more easily seen (70%)
b) MS group with stenoses that have not thickened but are seen under IVUS and are disruptive to the flow (29%)
c) nonstenotic MS group (<1%)

So comparing subgroup A to subgroup B does tell us something: there is lower flow when stenoses have thickened to the point that they are visible on MRI
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