The Canadian MS Society is not happy...

[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.
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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?

[Catty1]

My sister died of MS just over 4 years ago. If there had been a snowball's chance in hell that this might have worked for her, we would have gone for it.

She was brilliant and fun, and then not much more than a breathing corpse the last 2 years of her life. She was 48 when she died.

Hence, I do react strongly to this.

ETA: It's not so much the question of research being suppressed - it's more the pharma companies that produce the very expensive meds for MS.

[pomtzu]

Didn't Farrah Fawcett go to Germany for treatment?

Yes - and didn't she die??? She didn't want conventional treatment because she didn't want to have to "wear a bag". The conventional treatment might well have saved her if she had started early enough.

A friend of mine was diagnosed with colon cancer when in her 30's, and she declined chemo and opted for a radical treatment consisting of coffee enemas and there was something with sea shells involved - can't remember what. Of course she died. She was a very tiny, petite girl,, but looked like a shriveled up 90 year old lady, in a semi fetal position, laid out in that coffin. She left behind a husband and 2 small children. Her husband told me later, that the doctors were certain she would have survived if she had taken the chemo and radiation.

So these experimental, unproven, radical and dangerous miracle treatments, are much of the time, a death sentence, or at best, of no permanent value. False hope that they offer, usually only benefits the people that peddle their wares.

[Catty1]

http://calgary.ctv.ca/servlet/an/loc...ub=CalgaryHome

Alta. woman returns home after undergoing controversial procedure for MS

Christine Engelhardt spent thousands of dollars on controversial MS treatment in Costa Rica.

Updated: Wed Sep. 01 2010 16:56:35

ctvedmonton.ca


A Stony Plain nurse is back home after receiving a controversial new treatment for multiple sclerosis in Costa Rica.

Christine Engelhardt has been living with MS for 10 years. She says one of her first symptoms was blindness in her left eye.

Engelhardt is now one of many MS sufferers who've chosen to travel out of the country to receive the liberation treatment, which involves the widening of the veins.

The procedure is based on research from an Italian doctor who found blocked veins in some MS patients could be reversed by a procedure similar to balloon angioplasty. Several countries are offering the treatment and have reported successful results but it is still not available in Canada.

Engelhardt spent $20,000 to obtain the treatment in Costa Rica. She says two weeks ago she couldn't pour coffee without spilling because her hands had no strength. Her symptoms also included headaches, loss of balance, and severe muscle spasms.

"My fatigue was insane. I couldn't make it through a whole day," she said.

She says after undergoing the treatment in Central America, she felt instant change.

"When I first woke up from the anesthesia I could feel my left foot, which I haven't been able to feel for about two years."

Engelhardt says she is disappointed the treatment hasn't been approved in Canada.

"I just wish everyone had this opportunity to feel better because we deserve it...we deserve the choice."

On Wednesday, officials announced the federal government would not fund clinical trials in Canada.

"There's no evidence that venous insufficiency is linked in any way to multiple sclerosis," said Dr. Alain Beaudet with the Canadian Institute of Health Research.

Health Minister Leona Aglukkaq said the federal government will assemble a working group to study data from seven studies of the treatment, which are now underway.

"To ensure that we have the evidence to support this procedure, we need to do the research," Aglukkaq said. "And once we have that, we will proceed -- if there is enough evidence from the seven research projects already underway around this subject -- we will proceed with pan-Canadian clinical trials. We will support that. At this point in time, we do not have the evidence to proceed."

Aglukkaq said the studies are expected to take two years to complete.

With files from Susan Amerongen and CTV.ca News Staff

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Countries that are offering the procedure: Scotland, Germany, India, Poland, Costa Rica...that's all I know of. The first two, at least, aren't "third-world" countries.

[pomtzu]

I sincerely wish all the people who have had this treatment, lasting results, and that it proves to be positive, and not just a temporary fix - a very small bandaid if you will - on a very large wound.

I personally would be interested to see where they stand a year or two after the initial treatment, and if it has to be repeated.