The Canadian MS Society is not happy...

**Asiel** · 08-31-2010, 08:15 PM

I wish the whole story about the liberation treatment was posted when someone decides to discuss it. For one thing this is not something new that was just discovered...years ago it was studied under the name Charcot-Marie-Tooth, which is where Dr. Zamboni's data comes from. Also not mentioned was the fact that there has been at least 3 deaths so far from the stents some patients had to have put in, they became displaced and went to the heart and the patients died immediately. And no one seems to remember to mention the isotope dyes that have to be used for the procedure which many people are highly allergic to and do die from being injected with them, especially so close to the brain. Another fact nobody seems to think of mentioning is that Dr. Zamboni's wife did not have m.s which was the reason she refused to be interviewed and still does at this point.

Since Zamboni’s explosive news broke, independent scientists have tried to find some confirmation of his theory. Separate groups of medical researchers in Germany, Sweden, and Buffalo, New York, have used MRI and ultrasounds to examine the cerebral and jugular veins of patients with multiple sclerosis and those without.

The Buffalo study found that just over half the MS patients it screened had some vascular blockages, but that about one-quarter of people without MS had the same blockages. The more recent German and Swedish studies, published this month in the journal Annals of Neurology, found no relationship between blocked veins, blood flow and MS symptoms.

No matter. Over the last few months, trusting, vulnerable patients have been flocking to clinics in places like India, Poland and Bulgaria, paying up to $30,000 to undergo Zamboni’s risky and unproven “liberation” therapy. Some have come home saying they have more energy and range of movement.

Such testimonials, however inspiring, are not proof. In the first place, “liberation” therapy is used to treat a form of multiple sclerosis known as “relapsing-remitting MS.” It is a roller-coaster disease, where people can often experience remissions or lessenings of symptoms, sometimes for no apparent reason.

**pomtzu** · 09-01-2010, 08:46 AM

Originally Posted by Asiel

I wish the whole story about the liberation treatment was posted when someone decides to discuss it. For one thing this is not something new that was just discovered...years ago it was studied under the name Charcot-Marie-Tooth, which is where Dr. Zamboni's data comes from. Also not mentioned was the fact that there has been at least 3 deaths so far from the stents some patients had to have put in, they became displaced and went to the heart and the patients died immediately. And no one seems to remember to mention the isotope dyes that have to be used for the procedure which many people are highly allergic to and do die from being injected with them, especially so close to the brain. Another fact nobody seems to think of mentioning is that Dr. Zamboni's wife did not have m.s which was the reason she refused to be interviewed and still does at this point.

Since Zamboni’s explosive news broke, independent scientists have tried to find some confirmation of his theory. Separate groups of medical researchers in Germany, Sweden, and Buffalo, New York, have used MRI and ultrasounds to examine the cerebral and jugular veins of patients with multiple sclerosis and those without.

The Buffalo study found that just over half the MS patients it screened had some vascular blockages, but that about one-quarter of people without MS had the same blockages. The more recent German and Swedish studies, published this month in the journal Annals of Neurology, found no relationship between blocked veins, blood flow and MS symptoms.

No matter. Over the last few months, trusting, vulnerable patients have been flocking to clinics in places like India, Poland and Bulgaria, paying up to $30,000 to undergo Zamboni’s risky and unproven “liberation” therapy. Some have come home saying they have more energy and range of movement.

Such testimonials, however inspiring, are not proof. In the first place, “liberation” therapy is used to treat a form of multiple sclerosis known as “relapsing-remitting MS.” It is a roller-coaster disease, where people can often experience remissions or lessenings of symptoms, sometimes for no apparent reason.

Thanks for a more in-depth look into this. All too often, people jump on the bandwagon for new cures/treatments for so many dreaded diseases, without researching and reading the fine print. Yes - it might work to some degree in some cases, but it's not that magic cure-all that others expect it is. I suppose one could say "nothing ventured/nothing gained", and the experimental treatments have to start somewhere and with actual human subjects, yet these subjects should also be prepared for the idea that it might not work for them.

I do wish that this "liberation therapy" was the magic bullet, but I don't believe that any cure is visible just around the corner. I have seen and heard of the many ravages of MS from friends (

), ex co-workers, and an uncle who died from it many years ago, and would be delighted if this treatment would be what all MS sufferers are looking for.

**MoonandBean** · 09-01-2010, 08:50 AM

As most of you probably know, I have been very involved in promoting good causes via the pepsi challenge. I was following this one last month as they were "close but no cigar" but this month...they are starting out in first place so if you want to support them, here is the link:

http://www.refresheverything.com/mul...clerosisdreams

**Catty1** · 09-01-2010, 09:40 AM

As Neil put it - he faced the rest of his life being unable to move, in a wheelchair. If there was a ray of light under the door, he was going for it. He had NOTHING to lose, which is what many of the people with MS face. My sister was one.

I suggest you talk to someone that has actually had this done. Neil knows two other people near him that have had this procedure and are markedly improved. There is a woman in Calgary who was on the news - she had had this and again, there was improvement.

Neil told me that his surgeon mentioned stents - he doesn't use them because they necessitate about a year of blood thinners, and he doesn't like to use those drugs.

If you read Neil's letters to the editor about this subject, you would see he is anything but vulnerable (and gullible). There are calls in Canada to do studies on this technique - but it rocks the apple cart and too many people would lose jobs and money if it worked even 50% of the time.

I can easily believe it was known many years ago...it's medical politics that prohibits it from being studied properly. JMO. There have been protests by MS patients at various hospitals.

If you deny people a chance at life, they will take matters into their own hands, whatever the chances.

Wouldn't you?

**pomtzu** · 09-01-2010, 10:16 AM

Originally Posted by Catty1

There are calls in Canada to do studies on this technique - but it rocks the apple cart and too many people would lose jobs and money if it worked even 50% of the time.

I can easily believe it was known many years ago...it's medical politics that prohibits it from being studied properly. JMO.

I find it highly unlikely that studies and research would be suppressed because of loss of revenue to some greedy organizations. If that was the case, then there would never have been any cures for anything, ever. JMO of course...

**Asiel** · 09-01-2010, 11:59 AM

Originally Posted by pomtzu

I find it highly unlikely that studies and research would be suppressed because of loss of revenue to some greedy organizations. If that was the case, then there would never have been any cures for anything, ever. JMO of course...

You're absolutely right about that Pom....no studies and research have been suppressed because of loss of revenue. The MS societies of Canada are some of the hardest working Chapter's that I know . The people volunteering their time and money are to be commended instead of being called greedy. But our doctors and the Chapters are working together to see that we will not be used as guinea pigs in some research that has yet to be proven. Not one double blind study has been conducted up to date. And yes, I did see a few patients run off and have the procedure done... 5 to 9 mos later they are back at the same stage they were before. This "liberation" treatment has a big placebo effect on many patients and some are now admitting it. One man who couldn't cope with the unrelenting fatigue flew to Poland for the treatment and came back elated...6 mos. later he's right back where he was and he himself said it was the placebo effect.

When they publicize this treatment they seem to leave out any and all of the side effects and dangers and that has to make me wonder. As for people jumping on the bandwagon and demanding the treatment be made available there will always be those that enjoy the publicity this brings. If any ms patients have the energy to join up and rally they must not be feeling too bad off. If anyone has the money to pay for the treatment and want to forego safety and risk it, that's up to them. But people should know all the facts before shooting off their mouths and calling hardworking caring volunteers greedy. The doctors that treat MS patients would love nothing better than to find a real cure...so far this has not been proven to be the case.