This Is MS Multiple Sclerosis Knowledge & Support Community

From BNAC :

http://www.bnac.net/?page_id=667

follow the link and watch the whole wonderful presentation and Q&A from Saturday's town hall meeting at BNAC. Dr Zivadinov, Dr Weinstock-Guttman and Dr Siddiqi are wonderful doctors and researcher. These videos will tell you why. Note that they are also considering animal models very important. These videos are long but worth it.

ozarkcanoer

. .

Great post, ozarkcanoer. I'll be watching these later today! Does Dr. Zivadinov clarify his position on CCSVI?

Lyon, I'm on my Macintosh and have no problems with Safari.

Cece, watch the videos (they are loooong) and decide for yourself... please tell me what you think ???!!!!

ozarkcanoer

..

Great videos!! They are doing a very thorough trial.

The video segements from the Buffalo Patient Education program on May 7,2011 are also now on YouTube.

Must see TV! I wonder why their press releases provide solid conclusions that their presentations see as mysteries?

Thanks for the link. I get the feeling that they aren't going to give up on this.

Here are the slides (pdf) too:
http://www.bnac.net/wp-content/uploads/ ... 7-2011.pdf

on page 6 there's this:

Intra-luminal structural abnormalities:
•Web
•Flap
•Septum
•Membrane
•Malformed valve

Extra-luminal structural abnormalities:
•Stenosis
•Annulus

This fits with the recent talk of the vein being healthy but the things inside the vein (such as the valve, an "intraluminal structural abnormality") being what needs careful ballooning.

Functional abnormalities:
•Reflux/bidirectional flow
•Paradox
•No flow

What is meant by paradox?

One thing that was like a smoking gun for me, and I presume this was or will be in a published study, was Dr Zivadinov's clear statement that 'MS' patients have more jugular collateral veins. By itself, this speaks volumes.

I was particularly impressed that Dr. Zivadinov saved the best for last, and acknowledged the placebo group. These people went through a lot and didn't get any treatment for CCSVI. If it is determined that CCSVI was likely to have been causing them trouble, they spent a lot of time *not* being treated. Some of them might even have done that by choice.

It is important to remember one thing: this study ignored the most needy group, the progressive patients. The placebo group had the benefit of some of the best DMDs we could throw at them. I am still not convinced of any real difference in these patients, other than that people may have given them up for a lost cause. In Canada they are no longer considered treatable, and not given so-called disease-modifying drugs any more. I believe this is mainly to appease the insurance companies, since 'MS' is such an ill-defined condition, and they would otherwise have a cost twice what they currently have. It is terribly convenient to be able to begin ignoring these people just when they start to get to an unpleasant part of their disease, and start costing more to take care of.

These studies continue the actuarial fiction of "RR'MS'" vs "SP'MS'", and that in itself is probably the largest confounding factor of all. If the sample is hand-picked to be younger and healthier ("RR'MS'"), it is bound to confuse things. This is especially so with a disease that is congenital and consists of a semi-random set of abnormalities which will in all likelihood show the effects of age, in many cases more than the normal bodies they form parts of.

If these studies had included these patients Dr. Zivadinov would have had much more reason to be emotional at the end, because progressive means exactly that: no improvement is expected. Only the non-placebo patients would have had any chance of any improvement. That kind of study would be far less controversial and helpful to many. I think people would jump at the chance. I know I would.

Also needed is a study of Do-Not-Resuscitate cases to see if their status, like Mrs. Farrel's, improves.

Two kinds of patients are being ignored: those not expected to improve, and those not expected to survive. The promise of treatment for CCSVI is greatest, I believe, in those people.

I like that a scientist reserves the right to change her or his mind. She or he should also reserve the right to abandon faulty assumptions.

prairie wrote:The video segements from the Buffalo Patient Education program on May 7,2011 are also now on YouTube.

I'm very glad to have access to these videos, and expect to watch them a number of times. I appreciate the YouTube link, here also is a summary of links to specific subtopics: (this list is also available on YouTube, but it may be useful to have it here as well, at least for me).

Diagnosis of CCSVI:
Part 1 of 2
Part 2 of 2

Association and Causality of CCSVI with Multiple Sclerosis:
Part 1 of 2
Part 2 of 2

Buffalo Treatment Study (PREMISE):
Part 1 of 2
Part 2 of 2

Chance, Bias, Confounding, and Future Research:
Part 1 of 1

Question & Answer Session:
Part 1 of 3
Part 2 of 3
Part 3 of 3

--Tracy

Also needed is a study of Do-Not-Resuscitate cases to see if their status, like Mrs. Farrel's, improves.

Dr. Sclafani said, back in January, that he was one of the few IRs willing to treat patients in the upper levels of EDSS.

I think a study of DNR cases is very unlikely. The ethics get murky and there is a greater risk of patient death during the study due to the MS. Better to provide compassionate care to all upper level MS patients, even if they are necessarily excluded from studies.

I agree about studying CCSVI treatment in progressive cases. It takes away the question about the natural course of the disease or potential remissions. Progressive is however very slow, I would not want to see a control group going untreated for a very long time just to show the effects in the treated group.

Trial design is as complicated as it was last year! Maybe more so, now that we know how varied the doctors are in their techniques.

Cece wrote:

Also needed is a study of Do-Not-Resuscitate cases to see if their status, like Mrs. Farrel's, improves.

Dr. Sclafani said, back in January, that he was one of the few IRs willing to treat patients in the upper levels of EDSS.

I think a study of DNR cases is very unlikely. The ethics get murky and there is a greater risk of patient death during the study due to the MS. Better to provide compassionate care to all upper level MS patients, even if they are necessarily excluded from studies.

Of course, there could be no placebo group! I just think it is unethical *not* to provide it as an option for compassionate care, and that it would be unthinkable to waste the treatment by not studying it.

I agree about studying CCSVI treatment in progressive cases. It takes away the question about the natural course of the disease or potential remissions. Progressive is however very slow, I would not want to see a control group going untreated for a very long time just to show the effects in the treated group.

Trial design is as complicated as it was last year! Maybe more so, now that we know how varied the doctors are in their techniques.

You may have seen from a separate post of mine today that going untreated is seldom a matter of choice, and so-called 'progressive' patients, which everyone, given time, becomes, are not prescribed DMDs. So far there are no so-called first-line DMD treatments for so-called 'progressive' patients. My personal opinion on this is that it is an actuarial rather than a medical matter, which has only been created by financial concerns in the last 50 or so years. It is very convenient not to have to spend $30,000 per year anymore on questionable drugs, once a certain level of disability has been achieved.

However, I spent 4 years not receiving any so-called DMDs and testing a drug for SPMS. Doctors had no qualms about putting me on this trial, and I had no qualms being on it, even though I believe I became wheelchair-bound during that time. As I have said all along, let the patients decide. They will not let you down.

Hey! That's what I want my epitaph to be! --

"On placebo."

Of course, there could be no placebo group! I just think it is unethical *not* to provide it as an option for compassionate care, and that it would be unthinkable to waste the treatment by not studying it.

Don't worry, I wasn't thinking about a placebo group!
I agree so much about the compassionate care. Really upset about the push back from Medicare and BCBS and Anthem on covering the procedure here in the US. Would like to see a one-year timeline for when studies get completed and it's proven but it seems more likely to be a five to ten year timeline. There will be how many deaths from MS in five to ten years? How much progression?

I benefitted from my procedure and I'd wish the same benefits for all of us. I don't like seeing the situation in the US and Canada being that only those who can afford or raise $10,000 can go have this done. MS patients come from all walks of life and it can be an expensive illness and one that compromises earning potential, depending when it hits.