The Canadian MS Society is not happy...

[Catty1]

...because those who have the determination and the means are going overseas for the "liberation" treatment that unblocks a blood vessel and results in improvement. Tremendous improvement.

Neil, someone who is an old friend of the family, has been in a wheelchair for some time. His letters to the newspaper in the city of Saskatoon are well done! Long story short, he left for Germany on the 23rd (with a companion), had the procedure on the 26th, and came home on the 28th.

"So," I said today (31st), "what's NEW?"

He said, "I got my feet back." They have been completely numb from the ankle down; he can now wiggle his toes and feel a piece of paper on the floor under his foot.

His one hand, which was bent weirdly, is relaxing and resuming normal shape. His eyesight is clearer and brighter. AND - instead of lying in bed in one position, he can now turn over in bed.

He sees his GP tomorrow and his GP is going to refer him for physio. As he says, he needs to learn to walk again, and has a lot of work ahead.

My sister died from MS - it was 4 years ago in April. Yes, I choke on the "if only" - but thank GOD others have a real chance at having a good life.

Needless to say, some provincial governments are calling for this therapy to be tested in Canada...but some established conservative people in the health field (ie MS society et al) might well be out of a job.

I am just WOW on this.

[Grace]

My daughter-in-law was diagnosed with MS 17 years ago. Thank God, she's still doing very well. She uses a cane at times, but has had a very easy go of it - unlike so many others.

Those auto-immune diseases are really weird - if one in a family has one, chances are another member will also have one. Doesn't even have to be the same disease. In her case, it's her dad - he has Crohn's Disease.

[Laura's Babies]

I have a friend on my FB page that has MS and is going to get that treatment.. I think it is the same treatment anyway. She found a doctor in California that does it and was setting up and appointment to go see him when she found one in Florida so was trying to set up an appointment with that one when she found another one in Arizona.. Whichever one can get her in first is the one she is going to see..

[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.

[pomtzu]

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]

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]

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]

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]

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.

[Catty1]

I think some of the posters here should talk to someone with MS before they open their mouths.

[Catty1]

Link to this article is at the bottom. Please also browse through the reader comments below it.
*********************************************
Health minister rejects MS therapy trial
Canada won't fund clinical trial of so-called liberation therapy for multiple sclerosis as yet
Last Updated: Wednesday, September 1, 2010 | 1:10 PM

CBC News

Some Canadians with multiple sclerosis are going overseas for a controversial procedure known as liberation therapy that aims to improve blood flow from the brain. It is too early for a pan-Canadian clinical trial to test the treatment, Health Minister Leona Aglukkaq says.Some Canadians with multiple sclerosis are going overseas for a controversial procedure known as liberation therapy that aims to improve blood flow from the brain. It is too early for a pan-Canadian clinical trial to test the treatment, Health Minister Leona Aglukkaq says. (CBC)

The Canadian government will not fund a clinical trial of the so-called liberation therapy for multiple sclerosis at this time, Health Minister Leona Aglukkaq says.

Aglukkaq spoke to reporters in Ottawa on Wednesday, a day after a panel of North American experts announced they unanimously recommended against supporting a clinical trial of the treatment in Canada as yet.

Aglukkaq commissioned the expert panel's report from the Canadian Institutes of Health Research, which funds medical research, and the MS Society of Canada.

"I feel the most prudent course of action at this time is to accept the recommendation of the country's leading researchers," Aglukkaq told a news conference.
P.O.V.:

Should the federal government fund "liberation therapy" trials? Take our poll.

Liberation therapy is based on an unproven theory of chronic cerebrospinal venous insufficiency (CCSVI) — put forward by Italian doctor Paolo Zamboni — that blocked veins in the neck or spine are to blame for MS. Zamboni proposed treating multiple sclerosis by inflating small balloons to open up veins.

Some Canadians are spending thousands of dollars to seek the experimental treatment overseas.

CIHR head Dr. Alain Beaudet said experts weren't convinced Zamboni's procedure works and is safe. Beaudet said he advised Aglukkaq that it was too early to back clinical trials.
Safety questions

In June, the MS society and its U.S. counterpart awarded a combined $2.4 million in research grants to diagnostic studies aimed at testing whether Zamboni's theory is correct, by checking for abnormal blood flow in the veins in people with MS and healthy controls using ultrasound, MRI or catheters with dye. The research projects are expected to take two years.

Yves Savoie, the president of the MS Society of Canada, said Wednesday that his organization would monitor the results of the studies.

If they suggest there is a clear link between occluded veins and MS, then the society will recommend that a clinical trial testing vein opening be started quickly.

Beaudet said Zamboni's treatment is currently too risky to try in Canada.

"Any procedure where you inject a catheter in a vein, where you compress the vein, where you risk damage to the internal sheath of the vein, is not without risk."

But MS patient Tim Cant of Whitehorse, who travelled to India to undergo liberation therapy earlier this year, said he and others have seen their conditions improve.

"They talk about us being … one of the best medical systems in the world," Cant told CBC News on Wednesday. "Why is it so many Canadians are now travelling to other places in the world to get this operation done?"

Cant, who was diagnosed with MS three years ago, said if politicians could experience first-hand the physical and mental pain that multiple sclerosis inflicts on people, they would fund clinical trials without hesitation.
Objective measurements

To show liberation therapy works would require objective measurements, such as changes in muscle strength, a reduction in the frequency of relapses of MS symptoms or differences in MRI brain scans, Beaudet said.

Aglukkaq agreed that if evidence from the research projects supports the launching of a clinical trial, then the federal government would allow a pan-Canadian study of the ballooning therapy, called angioplasty, on patients.

For months, the federal Liberal position has been that the government should fund research to figure out whether the treatment is of benefit to Canadian patients or not, Liberal Leader Michael Ignatieff said Wednesday at the party's caucus meeting in Baddeck, N.S.

Ignatieff said it's not appropriate for politicians to say which treatment is going to work, but for doctors and scientists to do so, assisted by the federal government.

Saskatchewan Premier Brad Wall has said his province would fund a clinical trial into the procedure if it receives a research proposal for one.


Read more: http://www.cbc.ca/canada/calgary/sto...#ixzz0yJ9dtxTy

[Catty1]

One comment quoted here:

I have MS. I spend hundreds of dollars of month on drugs. I take a medication that is supposed to reduce relapses by 30% that can only be administered by injection. The injections are very painful and cause large lumps under my skin and joint pain. One of the possible side effects of this medication is cancer. I have been given so many prescriptions and I have so many drugs in my system and each one has very unpleasant side effects. My drugs make me feel worse than MS does. There may be a drug free way to reduce my symptoms but I cannot access it because in the end - an angioplasty may be too risky. Under the circumstances I am willing to take that chance.

[pomtzu]

I think some of the posters here should talk to someone with MS before they open their mouths.

You know not of what you speak - just by the above statement!

And I honestly don't see where the Canadian government is suppressing any testing to the monetary benefit of research and support organizations.

[Asiel]

I think some of the posters here should talk to someone with MS before they open their mouths.

You said a mouthful there so when will you be speaking to a real patient instead of listening to all the BS thrown around by the media. It's high time to stop spouting off stuff you read that was written by angry people who don't know the risks and dangers involved. If the truth of this whole matter were told many people would be backing down. Unless patients refuse to heed their physicians' advice and warnings on this matter then they are free to take the risks involved but they shouldn't expect the rest of patients with MS who choose to take a safe approach to join them in this fight. And I would hate to see our government waste money on something with so many loopholes and risks to patients. As I stated, there has not been one double blind study done as yet and so far many patients who had the procedure have returned to have it redone because they fell right back to where they were. Most of them have realized the placebo effect that the procedure had on them and admitted it.

[Marigold2]

I am happy for your friend, how wonderful to get one's life back. The US is not the only place on this earth that provides good medical care we are not front runners on many drugs either.
If a person is ill the should have the right to go any where in the world and get medical treatment that they deem and their family and love ones deem is best for them.
Didn't Farrah Fawcett go to Germany for treatment?
We have doctors without boarders how about patients without them?