CCSVI Neutral or Critical Perspectives

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

Postby eric593 » Fri Aug 06, 2010 2:23 pm

BooBear wrote:@ Cheer-

Cheer, I agree that the placebo effect exists. But I have trouble associating physical restoration to placebo.



Placebo DOES result in physical, inexplicable improvements.

How about the case of the multiple personality people who, when in their every day personality, require glasses, have diabetes and high blood pressure. But when they revert to another "personality", they no longer need glasses as their vision is 20/20, and their blood sugar and blood pressure are normal. And they have an accent. And are left handed instead of right handed.

If you don't think the human body is capable of unexplained physical transformation, then have a look at those examples of multiple personalities. Or the other website I posted where the man's cancer disappeared when he believed his treatment was working, only to have the cancer return when news reports surfaced that the treatment was ineffective.

You have not read very far if you do not believe that placebo can have profound physical effects on a person.

Placebo is real, it's a fact. We must accept it.

I don't understand what the big deal is. We can STILL believe that CCSVI treatment has an impact on MS yet be practical enough to appreciate that there IS and will be a placebo effect occurring as well. If you don't think it's ALL a placebo effect and the treatment has merit, then go for it. If you DO think it's all a placebo effect, then wait for the clinical trials to determine it before you get treatment.

We don't have to decide this now. Research will eventually tell us. In the meantime, we just need to accept that there will be a certain amount of improvement that can be attributed to placebo. How much or for how long, we can't tell until the trials are done. No big deal. I don't know why people get so defensive, placebo is just a fact of life, an example of the amazing connection between body and mind.
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Postby scorpion » Fri Aug 06, 2010 2:40 pm

At the expense of looking like I am jumping ship with Lyon I think his point about the 100% correlation Zamboni found between CCSVI and MS is really important. If no other study has found this high a level of association wouldn't it seem that Zamboni's original findings should come into question? The only other explanation is that Zamboni is the only one who can somehow manage to see these blockages which would be really grasping for straws. L you might get a feeling of dejavu but as more trials are done and no one else really gets close to Zamboni's original findings it certainly creates a lot of doubts. If these results can not be replicated doesn't it make sense that scientists call his original findings into question?
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Postby L » Fri Aug 06, 2010 2:47 pm

scorpion wrote:At the expense of looking like I am jumping ship with Lyon I think his point about the 100% correlation Zamboni found between CCSVI and MS is really important. If no other study has found this high a level of association wouldn't it seem that Zamboni's original findings should come into question? The only other explanation is that Zamboni is the only one who can somehow manage to see these blockages which would be really grasping for straws. L you might get a feeling of dejavu but as more trials are done and no one else really gets close to Zamboni's original findings it certainly creates a lot of doubts. If these results can not be replicated doesn't it make sense that scientists call his original findings into question?


I don't think so. These were definite MS cases, people referred by a neurologist (I mean, they weren't just a random sample of the patients who had been given the MS diagnosis, I presume that they were patients whose MS was considered a certainty) - supposition of course.. I remember discussing this with Marc Stock a couple of weeks back. He saw a high misdiagnosis rate with MS as inevitable. I was of the opinion that Dr Salvi, a neurologist with hundreds of peer reviewed articles to his name, would have had a much lower-than-average misdiagnosis rate. This combined with such a small population in the trial in question makes the findings believable to me.
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Postby PCakes » Fri Aug 06, 2010 2:56 pm

scorpion wrote: The only other explanation is ...


hmm..what about.. all the participants were chosen as they had previous MS diagnosis? if they all had MS, they could all have ccsvi? no? walks and quacks like a duck?

yes, i am aware of the 10% MS misdiagnosis stats but in a small study that 10% may have been missed.

I want to quote Cece here but can't find the orginal post.. so here is a butchered version..

If Zamboni's protocol is not followed without reason or explanation, how can the results be taken seriously? If you alter a recipe the results will vary.
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Postby Lyon » Fri Aug 06, 2010 2:58 pm

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Postby L » Fri Aug 06, 2010 3:00 pm

Lyon wrote:On one hand Zamboni's 100%/0% are vigorously defended and when it suits the needs someone not responding to CCSVI treatment the treatment is defended by the argument that he/she didn't really have actually have MS.


I have honestly (genuinely) never heard that argument. Where did you find it?
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Postby Cece » Fri Aug 06, 2010 3:06 pm

PCakes wrote:I want to quote Cece here but can't find the orginal post.. so here is a butchered version..

If Zamboni's protocol is not followed without reason or explanation, how can the results be taken seriously? If you alter a recipe the results will vary.

Pcakes, I like that! I don't remember ever saying it, but I will in the future. :)

Lyon, I think treatment of CCSVI is only expected to help MS and diseases that have a high correlation or develop into MS (Transverse Myelitis, optic neuritis, pars planitis...I have the latter two!) and also there is the related treatment of May Thurner as a disease that worsens the effects of azyous CCSVI. But I don't hear many people saying that treating CCSVI will help unrelated diseases. I do believe the International Society of Neurovascular Diseases that Dr. Haacke et al is forming will do good. It seems to me that blood flow to and from the brain is a neglected area of study with some promising potential to alleviate poorly understood neurological disorders. There is some research indicating possible vascular abnormalities in people with Parkinson's disease, I don't remember exactly but it was of interest.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby L » Fri Aug 06, 2010 3:11 pm

PCakes wrote:If Zamboni's protocol is not followed without reason or explanation, how can the results be taken seriously? If you alter a recipe the results will vary.


I think that was me going on about an omelette perhaps? http://www.thisisms.com/ftopic-12259-da ... te-15.html Strange behaviour for a vegan. Suffice to say, it's a very good omelette..
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Postby Lyon » Fri Aug 06, 2010 3:11 pm

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Postby L » Fri Aug 06, 2010 3:19 pm

Lyon wrote:
PCakes wrote: If Zamboni's protocol is not followed without reason or explanation, how can the results be taken seriously? If you alter a recipe the results will vary.
Another good saying is that "if you're not part of the solution, you're part of the problem". We've all lived CCSVI for the last couple of years. Although any of us should be able to by now, could any of us tell a neurologist the exact Zamboni protocols required to replicate Zamboni's results?

Here's the Fondazione Hilarescere website, if Dr Zamboni REALLY wanted his work replicated the simplest, smartest, easiest thing to do would be to post the protocols in plain sight.

Please show me that Zamboni is trying to be part of the solution and point out to me where he has posted the protocols prominently http://www.fondazionehilarescere.org/en ... ponde.html


Tell me Lyon, and I know you well enough to know that you won't object to my putting you on the spot like this, but if you had MS, quite a serious case, really affecting your day to day life and stopping you from doing lots of things that you'd otherwise do, would you get scanned and possibly treated for venous blockages or would you wait for more validation. Off topic I know but I am genuinely (honestly) interested. Not that it makes any difference to your views or statements, I'm just curious.
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Postby PCakes » Fri Aug 06, 2010 3:28 pm

.. i will not pretend to know where to look or how to secure this information. Dr Zamboni on all accounts seems open to share his findings and how he found them. I have yet to hear or read to the contrary.
I could say to you 'i know you are but what am i' but i would rather challenge you or anyone to offer a solid argument for not replicating the research as carefully as possible.
To do anything other only leaves opportunity for argument.
If his recipe is followed and the results return significantly different, would that not be more of a concern?
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Postby 1eye » Fri Aug 06, 2010 3:34 pm

I would like my former researchers, or someone similar, to run the same tests on me, before, immediately after, and at three month intervals, that was run on me for 2 years in the MBP8298 clinical trials: a walking test, 9-hole peg test, a quality of life questionnaire, and PASAT. I will submit to these. I will do my best to have these tests run on me anyway by non-professionals, because I think they are reasonably easy to run. Any results will be on YouTube, as will be before and after videos. These will hopefully be compelling by themselves, but BioMS also owns data from my results from lots of this kind of testing. I can't afford the MRIs, and I've had enouh Gadolinium

I guess I was among those statistics that showed it was not better than placebo, because that's what I was on. But I really was hoping it would help. If I am not any better, I think it will show in these tests. And if placebo works, hey, Zamboni can patent it, because it will be the first instance anywhere of placebo having any clinical efficacy.

If I get any guitar-playing back it will be by the grace of a God I don't even believe in.

The YouTube videos might not *all* be real. I couldn't fake one now, but there was a time I could have. Some people *are* very demented, but I don't see a huge number of people wanting to be involved in that way, in this little squabble. It would have to be a real faith-healing show. Those guys are professionals, and I used to see them in the black and white days, but I bet even then they made a lot of money. They even built a University named after one of them.

I had a PhD. psychologist test my cognition sometime in the last few years, and I would like to have a re-test after this procedure. I have gone seriously downhill over the years (the first one was a baseline when I was still working). I would be particularly be interested in my ophthalmology, since many measurements have been done of my double-vision, and some of them may even have been written down.

The real heavy lifting will not be done by the likes of Lyon or Scorpion. But if you look, you will find Dr. Haacke's protocol, which has the benefit of his late work, and that of others, and his attendance at Dr. Sclafani's symposium. It is very thorough, specific, and goes beyond Zamboni's first paper. We are all making history of one kind or another. Let the chips fall where they may.

I wanna be an anecdote
I wanna get placebo
It's the best drug you can never buy
But it's yours if you can believe

The sick people will all get well
The dead will come to life
When the test passes the student by
In the dust on the teacher's sleeve

You too will be on YOUTube now
Your veins will all be draining
You too can be an anecdote
You can be on placebo

If you will just believe oh
Your vessels will be free oh
You will begin to see oh
And you will turn the key oh
When you are on placebo
"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 » Fri Aug 06, 2010 3:36 pm

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Postby L » Fri Aug 06, 2010 3:40 pm

Lyon wrote:
L wrote: Tell me Lyon, and I know you well enough to know that you won't object to my putting you on the spot like this, but if you had MS, quite a serious case, really affecting your day to day life and stopping you from doing lots of things that you'd otherwise do, would you get scanned and possibly treated for venous blockages or would you wait for more validation. Off topic I know but I am genuinely (honestly) interested. Not that it makes any difference to your views or statements, I'm just curious.
I can't remember who asked it but I've answered this very question before and not to avoid the issue by pretending it was me because my wife does have MS and no pretending is necessary. If her MS was worse or progressing rapidly you can bet your ass I'd be doing anything legal or illegal, moral or immoral to get her in line before the rest of you chumps, fair or not, sorry 'bout that!

I've known that all along and admit it freely but I've also known and said all along that desperation shouldn't and really can't be allowed to direct science so that admittance in no way exempts the need to follow sound scientific principles the rest of the time.


Thanks Lyon.
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Postby cheerleader » Fri Aug 06, 2010 3:40 pm

Lyon wrote:
Here's the Fondazione Hilarescere website, if Dr Zamboni REALLY wanted his work replicated the simplest, smartest, easiest thing to do would be to post the protocols in plain sight.

Please show me that Zamboni is trying to be part of the solution and point out to me where he has posted the protocols prominently http://www.fondazionehilarescere.org/en ... ponde.html


Bob--
This is a REALLY good point. So far, Dr. Zamboni and his doppler technician have been able to train several doctors, including those at BNAC, Dr. Simka in Poland, Dr. McDonald from Canada, and Dr. Sclafani's doppler tech...but obviously, this is not moving quickly enough. I'm not sure that a video or document would suffice, since the docs report it is a very specialized series of test, but it sure would help to have some more specific info out there. This has been a real problem for us on the west coast, since even Dr. Dake couldn't find a doppler technician proficient in these tests and machines. Another difficulty is that the Esaote transcranial doppler is a rather new machine, and not popular in the states.

But Dr. Zamboni is not doing himself any favors by not publishing his specific doppler protocol. The only rationale I can think of is that he wants to make sure it's done to his standards, so that there are not false negatives....but with the negative studies coming out, he's going to need to do something. soon.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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