New MS Treatment?

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peaceseeker
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Re: New MS Treatment?

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I understand that many hands are tied (ie. job security) by the MS Society's actions but it's good to see somebody in the MS Society of Canada acting with a conscience...Kudos to you Ted Warren!!

MS Society’s stand sparks resignation
http://www.thetelegram.com/News/Local/2 ... ignation/1
Published on September 1st, 2010

Ted Warren has resigned as chairman of the St. John’s-Mount Pearl chapter of the MS Society of Canada over the national association’s stand on a new, but controversial treatment.

“I am writing to express my profound sense of disappointment with the MS Society of Canada's decision to oppose clinical trials of the so-called CCSVI therapy for treatment of multiple sclerosis. I believe this attempt to undermine the growing national consensus supporting the need for such large-scale trials does a serious disservice to the very group the society professes to serve, namely those who live each day with this condition,” Warren wrote to Yves Savoie, president of the MS Society of Canada.

This province has said it will support national clinical trials of the treatment.

Top Canadian and American scientists now say there’s not enough evidence to back claims by Italian Dr. Paolo Zamboni that blocked neck veins are linked with MS.

The Canadian Institutes of Health Research held a news conference Tuesday to make recommendations on MS research priorities. The head of the federal agency which funds health research said the experts weren’t convinced Zamboni’s procedure works and is safe, and so they say it’s too early to back clinical trials.

“There was a unanimous recommendation by the members of the working group not to support such a trial at this stage,” Alain Beaudet said.

“Quite simply, the experts agreed that there is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure.

“Nor is there any evidence at this time that there is a link between venous malformations and/or impaired brain venous drainage and multiple sclerosis.”

MS has long been thought to be an autoimmune disease. But Zamboni contends that iron builds up in the brain because blood isn’t draining properly.

Warren said he’s spent the last few months defending the society’s “nuanced approach, first conducting basic research on the theory to gauge its validity, but the growing tide of anecdotal evidence from patients who have experienced dramatic improvements in their condition cannot be denied.”

“For those of us who have to live with the the harsh reality of MS ... the mornings when you awake to discover that one or more of your senses has been compromised by something that happened while you slept ... the days when you find you can no longer do the things that define you as a person ... the nights when you lie awake in terror, fearing how much more of yourself might be lost before the next dawn breaks ... for us, the personal accounts of recovery and return to the way things were before MS represent more than just compelling stories. They represent that all-too-rare opportunity for hope that we, too, can look to a better tomorrow. And that hope, in itself, is a powerful medicine,” Warren said in his resignation letter.

“I've watched the sheer delight in the faces of MS patients when they see a person who went from barely walking to building rock walls after receiving CCSVI treatment. I've shared their tears as we heard of a wife’s first dance with a formerly disabled husband who has now returned to all the precious joys of a ‘normal’ life. And finally, I’ve watched those same faces contorted in anger because the organization that is supposed to be devoted to helping them is refusing to acknowledge the sense of urgency that comes from the cruel reality of life with a degenerative condition.

“This is not a uniquely Newfoundland phenomenon. There are groups of MS patients in every part of this country who have been quietly lobbying for all 10 provinces to step up and fund a universal clinical trial for all Canadians living with MS. By stubbornly resisting this groundswell, the society has placed itself in the position of actively opposing an initiative that is supported by the vast majority of Canadians living with MS. Surely, an untenable position for this organization to take.

“What is perhaps most disturbing about the society’s stance in this matter is the lack of sensitivity it shows to the hopes and dreams of those who have the most to lose in this whole debate, namely individual MS patients. If there is any possibility that there might be an effective treatment out there, perhaps even one that can restore what has been lost, the MS Society should be doing everything in its power to make that treatment available to those who need it most at the earliest possible date. To do as the society has done this week and stand squarely in the way of this process is quite simply wrong.

“I urge you to reconsider this ill-advised, paternalistic policy before it is too late.”
"I think our society is run by insane people for insane objectives...I think we're being run by maniacs for maniacal ends...but I'm liable to be put away as insane for expressing that. That's what's insane about it."
~ John Lennon
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peaceseeker
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Re: New MS Treatment?

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Dr. Alain Beaudet and the Pharmaceutical Industry---what you need to know.
http://www.facebook.com/notes/ccsvi-in- ... 0286607210
"I think our society is run by insane people for insane objectives...I think we're being run by maniacs for maniacal ends...but I'm liable to be put away as insane for expressing that. That's what's insane about it."
~ John Lennon
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peaceseeker
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Re: New MS Treatment?

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'This is a 29 minute lecture that reviews MS, CCSVI, and the literature that supports the CCSVI concept. May be a good reference for doctors who have no background with CCSVI at all.'

CCSVI Lecture by Dr. Andrews (part 1 of 2)
http://www.youtube.com/watch?v=uAlbdW2a ... re=channel

CCSVI Lecture by Dr. Andrews (part 2 of 2)
http://www.youtube.com/watch?v=lOzSe5cw ... re=channel
"I think our society is run by insane people for insane objectives...I think we're being run by maniacs for maniacal ends...but I'm liable to be put away as insane for expressing that. That's what's insane about it."
~ John Lennon
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Queen K
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Re: New MS Treatment?

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Peaceseeker, The Kelowna Daily Courier made mincement out of the "experts" view that the treatment is controversial today on the front page.

They featured a Kelowna MS patient who could not walk, much less golf before her treatment, and now she's GOLFING!

Ha Ha, MS Society, who cares if the treatment "cures" MS, it is making her life livable again.

:discodance:
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peaceseeker
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Re: New MS Treatment?

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Just another success story for an MS sufferer who left country to be treated for CCSVI.

But according to the 'experts' there's no evidence unblocking/opening veins relieves people of their MS symptoms - no, no evidence at all :dyinglaughing:



Experts not sold on controversial MS treatment pioneered by Italian doctor
Steve Rennie, The Canadian Press Sep 01, 2010
http://www.news1130.com/news/national/a ... ian-doctor

OTTAWA - Jan Mills can feel her fingertips.

Most people take that feeling for granted, but Mills doesn't. Multiple sclerosis stole the sensation right out of her hands 24 years ago.

But since a doctor in Mexico opened her clogged neck veins in April, Mills says she's been able to do all kinds of things she couldn't do before.

She can walk. She can drive a car. She can even play golf — though she jokes she's not going to make the Ladies Professional Golf Association tour any time soon.

But the thought of hitting the links must have been far from Mills' mind this winter when she was confined to a wheelchair and walker.

Mills travelled from her home in Kelowna, B.C., to a private clinic in Mexico this spring for an experimental MS treatment that has given hope to scores of people who suffer from the debilitating nerve disease.

Surgeons opened her blocked neck veins with a stent. She says she felt a change on the operating table.

"I moved my arm and was able to feel the palms of my hands, which have been numb for two decades," Mills said.

"And I thought, 'Oh my God, I can feel the palms of my hands.' And then while I was doing that, I noticed the dexterity of my fingers.

"I was so excited when they were wheeling me to the recovery room, where I met my husband ... and I said, 'Honey, look! I can feel my hands, and look how fast I can move my fingers.'"

Mills believes in the treatment. But a group of leading researchers isn't so sure.

Top North American scientists say there's not enough evidence to back claims by Italian doctor Paolo Zamboni that blocked neck veins are linked with MS.

The Canadian Institutes of Health Research held a news conference Tuesday in Ottawa to make recommendations on MS research priorities.

The head of the federal agency which funds health research says the experts weren't convinced Zamboni's procedure works and is safe, and so they say it's too early to back clinical trials.

"There was a unanimous recommendation by the members of the working group not to support such a trial at this stage," Alain Beaudet said.

"Quite simply, the experts agreed that there is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure.

"Nor is there any evidence at this time that there is a link between venous malformations and/or impaired brain venous drainage and multiple sclerosis."

Multiple sclerosis has long been thought to be an autoimmune disease.

But Zamboni contends that iron builds up in the brain because blood isn't draining properly.

So he treats his patients by opening up the veins, either by inserting a small balloon — a procedure called angioplasty — or by inserting a stent.

Zamboni's research found vein blockages in all the MS patients he examined, and no blockages in healthy people he used as control subjects.

But work elsewhere hasn't entirely supported his findings.

It's not clear if MS causes blocked veins, if blocked veins cause MS, or if the two are entirely unrelated.

Yet even the faintest glimmer of hope has been enough to persuade Canadian MS patients to travel to clinics in Europe and pay for the procedure.

Some sufferers of MS and their families have been vocal in their demands that the MS Society of Canada back Zamboni's treatment.

But the head of the society says those people make up just a small group of MS patients, and most are waiting to see if the treatment actually works.

"The large majority — and the more quiet majority, in terms of social media — I think look at (the treatment) with optimism, hope, but a dose of skepticism," Yves Savoie said.

"At this current state of evidence, the theory of (the treatment) is neither dismissable or refuted, but it's also not proven."

The MS Society of Canada has said it wants to know more about any possible link between blocked veins and MS before it backs Zamboni's work.

In June, the society and its U.S. counterpart awarded a combined $2.4 million in research grants aimed at finding out if Zamboni's theory is correct.

That research is expected to take two years.

But the Saskatchewan government has opted to fund clinical trials of the contentious treatment despite the lack of solid proof it actually works.

The Ontario government, on the other hand, has opted not to fund clinical trials. Other provinces, such as Manitoba, have been noncommittal.

Liberal MP Carolyn Bennett, her party's health critic, wrote on her blog that it is "disappointing that Canadians with MS will have to wait still longer for definitive answers on the efficacy" of Zamboni's treatment.
"I think our society is run by insane people for insane objectives...I think we're being run by maniacs for maniacal ends...but I'm liable to be put away as insane for expressing that. That's what's insane about it."
~ John Lennon
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Queen K
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Re: New MS Treatment?

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That's it! That's the article on today's front page. Thanks. :sunshine:
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peaceseeker
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Re: New MS Treatment?

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Queen K wrote:Peaceseeker, The Kelowna Daily Courier made mincement out of the "experts" view that the treatment is controversial today on the front page.

They featured a Kelowna MS patient who could not walk, much less golf before her treatment, and now she's GOLFING!

Ha Ha, MS Society, who cares if the treatment "cures" MS, it is making her life livable again.

:discodance:


Yes, I read the article (with welling eyes) during my lunch today...but I had difficulty finding it on the Daily Courier's website. Anywho, I found another link - and posted it above.

My sister an I have been down to the False Creek Healthcare Centre for preliminary testing and (surprise, surprise) both tests came back positive, providing enough evidence to go forth. We're in the works with a few places - Seattle would be the best bet...it could happen soon (crossed fingers).

The latest action by the president of the Canadian Institutes of Health Research, Dr. Alain Beaudet, is despicable, to say the least. Obviously our 'loving leaders' (whoever that is) do not want this made available in Canada for some time.

I'll finish by saying to all the Castaneters out there (the same as I have said to family and friends), to please stop supporting the bogus MS Society - it is now blatantly obvious that it does not have the welfare of pwMS in its best interests.
"I think our society is run by insane people for insane objectives...I think we're being run by maniacs for maniacal ends...but I'm liable to be put away as insane for expressing that. That's what's insane about it."
~ John Lennon
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Queen K
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Re: New MS Treatment?

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There is hope. Manitoba and Sask. are willing to move forward in this research, independant of Ottawa.

I see this a positive sign in the face of massive opposition from the MS Society. Clearly someone up high does not want to lose their funding, and God knows, this new treatment signals an end to continuous research and cushy conferences.

All the best to your sister. When, not if, she gets the treatment, I hope you have a "before and after" well documented and posted on Youtube, Myspace, Medical sites, and on the forehead of every naysaying Dr. in Canada.
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peaceseeker
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Re: New MS Treatment?

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Queen K wrote:There is hope. Manitoba and Sask. are willing to move forward in this research, independant of Ottawa.

I see this a positive sign in the face of massive opposition from the MS Society. Clearly someone up high does not want to lose their funding, and God knows, this new treatment signals an end to continuous research and cushy conferences.

All the best to your sister. When, not if, she gets the treatment, I hope you have a "before and after" well documented and posted on Youtube, Myspace, Medical sites, and on the forehead of every naysaying Dr. in Canada.


Thank you for the kind thoughts...much appreciated.

It will be interesting to see how far Man. and Sask. get with their research...I have a feeling they won't get too far (I sincerely hope that I am wrong). People should familiarize themselves with Dr. Alain Beaudet, it may shed some light as to why the CIHS has taken such a stance on the matter.
"I think our society is run by insane people for insane objectives...I think we're being run by maniacs for maniacal ends...but I'm liable to be put away as insane for expressing that. That's what's insane about it."
~ John Lennon
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Villagemaid
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Re: New MS Treatment?

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Three more sleeps and I leave Kelowna for Bulgaria...when I get back I'm going to have a big CCSVI party.....call the papers..... :discodance:
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Queen K
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Re: New MS Treatment?

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Not to be nosy, but you have ALL your inabilities recorded with your Dr. right?

And when you get back you'll have ALL of your recovery recorded with your Dr.?

And the MS Society?

I wish you all the best and hope these jerks see the real truth, that to a MS patient, every recovery counts. And that's it.
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peaceseeker
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Re: New MS Treatment?

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Villagemaid wrote:Three more sleeps and I leave Kelowna for Bulgaria...when I get back I'm going to have a big CCSVI party.....call the papers..... :discodance:


Three more sleeps!...can I get a woop woop :cheerleader:
"I think our society is run by insane people for insane objectives...I think we're being run by maniacs for maniacal ends...but I'm liable to be put away as insane for expressing that. That's what's insane about it."
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Bsuds
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Re: New MS Treatment?

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Good Luck, I hope it works for you!
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Re: New MS Treatment?

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Bsuds wrote:Good Luck, I hope it works for you!

I second that!

With all the "experts" trying to debunk it, it really makes you wonder...
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Queen K
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Re: New MS Treatment?

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Phoenix Within wrote:
Bsuds wrote:Good Luck, I hope it works for you!

I second that!

With all the "experts" trying to debunk it, it really makes you wonder...



It makes me wonder why such a simple procedure is being debunked but I thought of the answer today. Big Pharma has been intent on creating a "treatment" in pill form, something all those MS patients have to be dependant upon, daily. With this treatment it's one procedure and a few follow ups, no? Where's the big profit in that?
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