The science and politics of CCSVI and Multiple Sclerosis

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

Postby 1eye » Sun Jun 20, 2010 11:47 am

Hello.

I think maybe there is some built-in bias here that Cheerleader can't do anything about. I believe it's not difficult to tell that being or having been Dr. Freedman's MS patient has skewed some people into bringing his name into things a lot. He has been on TV before, probably in newspapers before, maybe even radio.

When a report is done some attempt is usually made to keep things 'unbiased' by presentiing opposing viewpoints. So given his prior exposure it has fallen on him to represent an opposing viewpoint. However, given the accumulated anecdotal success of this treatment, its proponents believe with the faith of the religious in its truth and efficacy. No prior treatment (and there have been others, even surgical) has been successful, in 150 years of trying, partly because it was not possible for *most* of that time, and partly because of the usurious behaviour of some drug companies, who, it must be admitted, have taken advantage of the victims because they had no alternative.

A lot of people have a lot to lose. But nobody here has been echoing Dr. Freedman's opinions. It seems people have complained that the science is not there at the press of a button, as simple as making an appointment at a commercial clinic. Well, science and the truth do have a tendency to take longer than that. The heartening thing to me is that a lot of the same people doing scientific work on CCSVI are also saying, as Dr. Zamboni has said, treat the faint hope people at least.

This action alone would be enough for a lot of the people here. Not that the people who are not disabled yet are less deserving. It would remind people of the essential well-meaning humanity of those doctors, when nothing else can be offered, and venoplasty by extremely competent physicians is their only wish. The fact that those same doctors do it pro bono sometimes, and do things like flying to Italy to consult with other vascular doctors, and are doing a lot of the basic science required, I would call a good bonus and extreme good luck.

I have said "lets hit them where it hurts; in the CRABs". I did not hear from the drug companies. So the sources of scientific information have been limited perhaps by reporters not having the imagination to go beyond Dr. Freedman's interviews, and papers on 20 patients. But I have also made it clear, I hope, that I am not a doctor, not qualified to be one, and would never tell anybody what not to take. The drug companies have been notably silent, so I can only conclude they do not feel nearly as concerned as some others.

Thanks, Cheerleader, for starting this and staying with us so long. I realize people with real lives have much more to do than post here. I hope to have one again soon.
"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 erinc14 » Sun Jun 20, 2010 12:57 pm

I believe drug company minions are on this board . Their answers are so friggin long.
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Postby concerned » Sun Jun 20, 2010 1:00 pm

Who?
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Postby scorpion » Sun Jun 20, 2010 3:02 pm

Since you are new to the board I will fill you in the this drug company stuff. Usually when there is a good point made or a critical question asked it is simply deflected by saying the poster must be part of the pharma conspiracy. It generally works.
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Postby nicknewf » Sun Jun 20, 2010 6:37 pm

This is the most confusing of all the boards I've read through. I echo 1eyes' comment; and add, concerned, I'm sorry you have to spend your whole working day on ccsvi and then have to come here again to hash it all out some more.

The presentations to Canadian Parliament from Simka and Zamboni are convincing enough that there is no bona fide reason to deny this treatment to those who want it.

Why is CCSVI so controversial? It should be explored, not vilified.
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Postby concerned » Sun Jun 20, 2010 7:31 pm

Well, I don't work, so whatever... I do take care of my mother, who has MS... IF I'm supposed to be paid by big pharma for this, show me the money.
So anyone can make any calim they want and call it science, and nobody has a right to question it? There is nothing in those studies which points to any kind of proof...
Last edited by concerned on Mon Jun 21, 2010 8:54 am, edited 1 time in total.
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Postby erinc14 » Mon Jun 21, 2010 6:41 am

vieavie

I forgot to mention I am from Montreal too :D Lasalle
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Postby nicknewf » Mon Jun 21, 2010 8:25 am

concerned, sorry to hear about your mother. That's horrible.

There is plenty of clinical evidence that this treatment option is safe, effective at both reducing the probability of relapse and ameliorating symptoms. Certainly there is enough evidence to satisfy the beneficence test - so if a patient wants it and a doctor is willing and competent to perform it, the government and regulators should stay out of the way. And in other contexts, this is what would happen - rarely are demands made for double blinded trials when the clinical evidence justifies treatment and there is no better alternative. What is happening in relation to CCSVI in MS is a departure from normal practice - not an example of best practice.

Just because the clinical evidence is not part of a trial (although Simka is running a trial, has published, and will publish again soon according to his presentations to Canadian Parliament), does not mean it is useless from an evidenciary perspective - just as the 2 clinical reports of complications are not to be discounted. Every person who has had this treatment forms the universe of clinical evidence around this alternative theory of the disease. The only additional benefit offered by a double blinded study (if this is even an ethical option any more), is to discount the placebo effect. The placebo effect can also be discounted by a number of other factors - including time.

Is a double blinded study even ethical now that there is so much clinical evidence; the problem being that such a study would require denying some of the participants access to the only possible treatment. The clinical evidence available suggests that the majority of patients have some improvement with no other better option; so even if it is ethical to start a double blinded trial - such a trial is likely to end very quickly on the grounds that the benefit is clear and it is unethical to deny a patient the best treatment. (I am assuming that the 1600 people treated thus far are not all part of a global conspiracy.) If that is not the result, it will be very telling.

I think we both joined in on reading the THISISMS account of the debate, and are also following the debate elsewhere. I want to treat your concern with the same legitimacy as my optimism. If I'm being too dogmatic, that is not my intent.

My view is that more research is needed; but there is sufficient evidence to let people with progressive forms of MS obtain treatment if they want to; and I have also formed the opinion that denying this routine treatment which is offered for a variety of other vascular conditions (not just heart patients) is discriminatory. I realize that even among people who want access to the treatment, my latter opinion may be considered premature.

I have also formed the opinion that the controversy surrounding this treatment eminates from the knee jerk reaction of the national MS societies; and that treatment trials would already be underway if not for them. I have no prior experience with the MS societies, but having listened to the testimony in the various subcommittee meetings, they appear to be taking the opposite stance from what I would have expected.

A brief examination of the path to acceptance of other non-drug therapies as compared to the national MS societies reactions will bear this out. Just last week, a blood clot vacumn was laudedafter 27 uses in Calgary - largely on the strength of lobbying from Heart&Stroke. (http://edmonton.ctv.ca/servlet/an/local ... montonHome).

Let's compare how long it takes for each of these procedures to get approved!

Even if this whole thing is a "hoax", the MS societies should be moving as quickly as possible to answer that question determinatively. The only way to do that is to perform safe venograms and venoplasty on a couple hundred of the thousands of willing volunteers. If they can fund bone marrow transplants, they can fund this and should have.

The fact that they are attacking the scientific linkages rather than trying to disprove the benefit of the treatment demonstrates that they do not seriously believe that this is a hoax, but are merely entrenched around their own dogma and/or revenue stream.
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the bottom Line

Postby lumpc1 » Mon Jun 21, 2010 9:30 am

All the BS they can come up with amounts to mute. one thing that seems to be lost in all this. we know were the road we are on with their worthless drugs. if there were 1 in a thousand shot we should take it and most of us would. cause they got nothin'. ccsvi and liberation is much more than that. this coming from someone that it took 22 years to cripple and then only accelerated by GB surgery. they got nothin'.
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Postby dialed_in » Mon Jun 21, 2010 12:45 pm

From this page:

concerned wrote:Well, I don't work, so whatever... I do take care of my mother, who has MS... IF I'm supposed to be paid by big pharma for this, show me the money.
So anyone can make any calim they want and call it science, and nobody has a right to question it? There is nothing in those studies which points to any kind of proof...


From page 1:

concerned wrote:Also, I'm not a scientist or neurologist or vascular doc so reading those studies means literally nothing to me. Seeing a consensus built in the relevant fields would. But in the mean time, I think it's time to stop the groupthink, hyperbole, fuzzy analogies, character assassinations, etc....


So which is it? You obviously won't even read the material, but you'll run around here posting that there is no proof. Not to mention at the same time you are trying to tell Cheerleader (someone that HAS done the reading) how to conduct herself. Who should take responsibility for how you conduct yourself? Colin Rose maybe?
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Postby eveable » Tue Jun 22, 2010 3:56 pm

I had my annual neuro visit today. I showed him my test results showing reflux in both IJ's. He asked what I wanted to do about it and I told him I should have a venogram and an angioplasty. We talked about CCSVI. He did not rubbish it. He said when it was first discovered he hoped it was the breakthrough he had been waiting for. He said he would love to get rid of all his MS patients as MS is a hard disease to treat. He added that he is paid by the University to train neuro's. He gets no money from pharmaceutical companies.
The Buffalo study changed his mind about the breakthrough. He was present at the conference when the study data was presented. The lower number of MS patients with CCSVI compared to controls and the equal number of MS patients and patients with other neurological disorders made him think that CCSVI was a consequence, not the cause.

He went on about Dr Dake and the death that occured. He mentioned the dislodged stent but agreed with me when I said that patient did not die. He says the CCSVI is a business and I agree when I see the amount of ads for CCSVI treatment. He said that blocked veins were not uncommon and did not have to be opened. I tried to talk about the iron in the brains of MS patients but he was still talking about the 80's and the mistake made then to open blocked jugulars.

He talked about the placebo effect which I know is high. He did not know Steve Garvey when I mentioned that he could now walk again. He has patients who have had the procedure and he can find no changes in them.

He did the usual testing, my strength has not changed since last year.

It was a good discusion. He thinks we need more testing and I agree but he wants testing showing that CCSVI causes MS and I want testing showing the effect on people with MS after having their veins unblocked. We talked about the Buffalo treatment study. I wanted to know if he thought 30 patients was a good sample. I do not. He said the neuro there was shamed.

Please comment.
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Postby concerned » Tue Jun 22, 2010 4:05 pm

dialed_in wrote:From this page:

concerned wrote:Well, I don't work, so whatever... I do take care of my mother, who has MS... IF I'm supposed to be paid by big pharma for this, show me the money.
So anyone can make any calim they want and call it science, and nobody has a right to question it? There is nothing in those studies which points to any kind of proof...


From page 1:

concerned wrote:Also, I'm not a scientist or neurologist or vascular doc so reading those studies means literally nothing to me. Seeing a consensus built in the relevant fields would. But in the mean time, I think it's time to stop the groupthink, hyperbole, fuzzy analogies, character assassinations, etc....


So which is it? You obviously won't even read the material, but you'll run around here posting that there is no proof. Not to mention at the same time you are trying to tell Cheerleader (someone that HAS done the reading) how to conduct herself. Who should take responsibility for how you conduct yourself? Colin Rose maybe?


So these studies have generated a consensus in their relevant fields? I said that would point towards "proof" to me and I don't see that. Where is the contradiction in what I said?
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Postby mshusband » Tue Jun 22, 2010 4:31 pm

concerned writes like a very educated person ... for someone who doesn't work.

Weird isn't it ... his diction and vocabulary and sentence structure?

Contradiction?
Consensus?
Relevant?

Strange ... that's all I'm saying ...

Strange.
Last edited by mshusband on Tue Jun 22, 2010 4:33 pm, edited 1 time in total.
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Postby concerned » Tue Jun 22, 2010 4:33 pm

Not working gives me a lot of time to read. 8) 8) 8) 8) 8)


I'll take that as a compliment but I'm sure you meant it as an insult. :lol:
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Postby jackiejay » Tue Jun 22, 2010 5:38 pm

I think Dr. Zamboni's findings have been replicated....otherwise the CCSVI theory might have waned after November airing of W5. (eg. in Jordan, Kuwait,Poland and closer to home...Dr. McDonald in Ontario.)...the evidence keeps building and that is hard to dispute.
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