New MS Treatment?

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grammafreddy
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Re: New MS Treatment?

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peaceseeker
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Re: New MS Treatment?

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With regards to the recent take-note debate in the House of Commons...Dr. Embry (President and Research Directory, Direct-MS) wrote a letter to parliament...to reiterate Joan's final words (her post found below - my emphasis added), Thank you, Dr. Embry.


' Direct-MS president Dr. Ashton Embry's letter to Parliament
Yesterday at 7:27pm
http://www.facebook.com/notes/ccsvi-in- ... 5401247210

Dr. Embry is President of Direct-MS, Canada's second largest MS charity. In sharp contrast to the MS Society of Canada, Direct-MS spends under 2% of its revenue on administrative and fundraising expenses. Direct-MS is a volunteer charity. Direct-MS volunteers live with MS, they don't live off MS. Direct-MS funds scientific research, and was the first charity to recommend adequate vitamin D for pwMS. In 2000, Dr. Embry published the first paper in the Annals of Neurology which demonstrated a correlation of vitamin D levels with MS disease activity.

Direct-MS was at the fore-front calling for an investigation into Dr. Zamboni's ground-breaking research and discovery of CCSVI by the MS Society of Canada back in July 2009. Dr. Embry received no interest from the MS Society of Canada, and then later contacted Avis Favaro of CTV with the information.

"Another major difference between Direct-MS and MSSOC is that Direct-MS strongly advocates for the availability of CCSVI testing and treatment throughout Canada within the next 12 months. This advocacy is based on an objective, thorough, and “conflict of interest-free” analysis of all the available scientific information on CCSVI as well as our strong patient-centred culture."

Read this letter. It is honest, forthright and powerful. It is fact-based and free of conflicts of interest. Dr. Embry does not make his living off of MS patients...he's a world-renowned researcher and geologist. He does this because he knows MS and wants to end MS. He does this because his son has MS. He does this for all of us.

Here's the letter. If you haven't made your charitable contributions to the MSSOC yet, consider Direct-MS.


http://www.ccsvicalgary.org/wp-content/ ... -06-10.pdf


Thanks, Dr. Embry-
Joan '
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peaceseeker
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Re: New MS Treatment?

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The Reformed Multiple Sclerosis Society
http://www.reformedms.org/
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Re: New MS Treatment?

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edited and resubmitted by poster
Last edited by peaceseeker on Aug 6th, 2010, 9:54 am, edited 1 time in total.
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strwbrrydvl
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Re: New MS Treatment?

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Sask. to pitch MS trial to other provinces
Last Updated: Wednesday, July 28, 2010 | 6:25 PM ET Comments36Recommend35.CBC News
The controversial treatment is based on thinking MS can be treated by opening constricted veins in the neck and chest. Dr. Paul Hebert, above, editor-in-chief of the Canadian Medical Association Journal, has pointed out that there is no established link between venous blockages and MS. (CBC)
Saskatchewan Premier Brad Wall says he will raise his proposal to fund clinical trials of a controversial multiple sclerosis treatment with other premiers next week.

The MS treatment isn't on the formal agenda for next week's Council of the Federation meeting, Wall said Wednesday in Saskatoon, "but I will be raising it with premiers."

On Tuesday, Wall said Saskatchewan is willing to fund trials of the promising but unproven treatment for MS, known as liberation therapy. The province has perhaps the highest rates of MS, he said, but the treatment offers them hope.

The treatment is based on thinking MS is a vascular disorder that can be treated by opening constricted veins in the neck and chest.

Canadians with multiple sclerosis have gone to countries such as Hungary, Poland and Bulgaria to seek the treatment, which is not available in Canada.

"There may be provinces that wish to join with Saskatchewan," Wall said. "We would welcome that. I think the broader scale approach is better, both to advance the clinical trials themselves, and maybe if there is reason to move beyond that together. But in the meantime, we're prepared to do the work here in Saskatchewan."

Ontario Premier Dalton McGuinty said the surgery seems to offer some promise but that he'd like to see more than anecdotal evidence supporting the procedure.

"Its just early days yet," McGuinty said. "Its very interesting. Our responsibility now is to make sure that it, in fact, is something that we should be supporting."

More research will speed up search for answers
In a statement, the Multiple Sclerosis Society of Canada said: "We are hopeful that additional research approaches to this important issue will allow us to advance the speed of research and allow scientists to discover the definitive answers to the questions relating to CCSVI at an even faster pace.”

The announcement came too late for David Molyneux, 23, of Toronto, who had already spent tens of thousands of dollars to have the procedure done in Bulgaria last month.

"I played golf Saturday and Sunday this weekend and came home, and I didn't go right to bed. I was able to stay up," Molyneux said. "So, right there, that's definitely a positive, my energy level."

Don't base policy on hope: CMAJ editor
Dr. Paul Hébert, a critical-care physician in Ottawa and editor-in-chief of the Canadian Medical Association Journal, has said that manipulating veins can be dangerous, and there is no established link between venous blockages and MS.

In an editorial last month, Hébert and his co-authors noted MS is difficult to study because the symptoms are so subjective and its natural history follows a waxing and waning course.

Many patients understand this, the editorial said, but nevertheless insist on having the treatment, known as venous angioplasty, offered to them out of fear of loss of function.

"But good health policy decisions should not be based on hope and desperation," the editorial writers said, adding that on the other hand, scientists and skeptics should avoid dismissing new ideas prematurely.

Wall said his understanding is the province is a long way from receiving a specific proposal for a clinical trial. When the trial is ready to recruit patients, researchers will assess which subjects are eligible to participate, he said.


Read more: http://www.cbc.ca/canada/story/2010/07/ ... z0v1GlLNvg
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grammafreddy
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Re: New MS Treatment?

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Sometimes I wish governments would quit playing god and let people make their own decisions regarding their health. If there's a qualified practitioner in Canada who wants to do this procedure, I think people should be allowed to have it done and have it covered under their medical plans. When governments are allowed to "pick and choose" who lives, who dies, who gets the meds they need, who doesn't, who gets care, who doesn't ... it just doesn't seem right.
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Queen K
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Re: New MS Treatment?

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What kills me is that the MS Society begs for donations every freaking day, every ad they have on TV is based on on on....HOPE! Yup, they say, someday we HOPE to cure MS.

Well here is a treatment giving people back a quality of life they lost. Having worked with MS patients for years and years and years I assure anyone reading this that those people don't give a rat's tail what the NON MS people think or say about temporary treatments. If this treatment gives an MS patient back a quality of life, and by reading every account of those treated, it does, then SHUT UP NO MS people. Shut up. I mean it. McGinty, "it's very interesting" SHUT UP, MS patients are not interested in you treating this like a zoo display. They want NOW, the treatment now and affordable and at home.

Few can imagine the indignities people go through when the disease progresses, so get the freaking Canadian trials going and none too soon. Thank you Saskatchewan for your willingness to step up to the plate.

Why should Canadians have to spend thousands in Europe when all they want is a quality of life given back which was not an option before and it's like the guy on tv said today, "I'm not cured of MS but that is NOT the point." That's right, the point is that is every day life has regained something that is unimaginable to those "debating" other people's lives. I also think the MS Society feels immensely threatened with their fund raising campaigns if this treatment is wide spread, GAWWEDDD donors might get the impression a cure has worked.

I hope Liberal Governnment here will get it, someday.
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Queen K
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Re: New MS Treatment?

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VillageMaid, how did your July 12th treatment go? Are able to tell us about what you experienced?
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Re: New MS Treatment?

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Hi!

I actually changed my appointment as I got a date set for Bulgaria......I would rather go to Bulgaria for the angioplasty (personal decision, I have done lots of research and feel more comfortable going there than Costa Rica).

I leave Kelowna on September 4th.....am admitted into Tokuda Hospital on the 8th. I will be back home on the 15th.

I will keep you all posted on it!!

Thanks!
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Re: New MS Treatment?

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I'm sad that you have to go to Bulgaria at all.

I hope you are documenting all your symptoms now and will keep a log of all your improvements and then knock down the door at the MS Society to make them listen.

Good luck.
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Re: New MS Treatment?

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Thanks Queen.......yes...it's all documented.....I'd rather kick the Minister of Health first, the Neuro's second, and then the MS Soicety.....lol......
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Re: New MS Treatment?

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Queen K wrote:I hope you are documenting all your symptoms now and will keep a log of all your improvements and then knock down the door at the MS Society to make them listen.

I got a friend who's wife has MS, and after seeing all the red tape and stalling, he's convinced that the MS Society has no interest in seeing this procedure come to life in Canada anytime soon.

In his point of view, if people start to get better, and then the MS Society loses their donations, some people's high end jobs in that organization will be in jeopardy. His explanation is a little more detailed, but that's it in a nutshell.

I hate to say it, but he does have a point.
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peaceseeker
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Re: New MS Treatment?

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Queen K wrote:What kills me is that the MS Society begs for donations every freaking day, every ad they have on TV is based on on on....HOPE! Yup, they say, someday we HOPE to cure MS.

Well here is a treatment giving people back a quality of life they lost. Having worked with MS patients for years and years and years I assure anyone reading this that those people don't give a rat's tail what the NON MS people think or say about temporary treatments. If this treatment gives an MS patient back a quality of life, and by reading every account of those treated, it does, then SHUT UP NO MS people. Shut up. I mean it. McGinty, "it's very interesting" SHUT UP, MS patients are not interested in you treating this like a zoo display. They want NOW, the treatment now and affordable and at home.

Few can imagine the indignities people go through when the disease progresses, so get the freaking Canadian trials going and none too soon. Thank you Saskatchewan for your willingness to step up to the plate.

Why should Canadians have to spend thousands in Europe when all they want is a quality of life given back which was not an option before and it's like the guy on tv said today, "I'm not cured of MS but that is NOT the point." That's right, the point is that is every day life has regained something that is unimaginable to those "debating" other people's lives. I also think the MS Society feels immensely threatened with their fund raising campaigns if this treatment is wide spread, GAWWEDDD donors might get the impression a cure has worked.

I hope Liberal Governnment here will get it, someday.


:134: Well said, Queen K...thanks for the support.
"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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peaceseeker
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Re: New MS Treatment?

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Villagemaid wrote:Thanks Queen.......yes...it's all documented.....I'd rather kick the Minister of Health first, the Neuro's second, and then the MS Soicety.....lol......


I'm with you on that...where's the lineup?
"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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peaceseeker
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Re: New MS Treatment?

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Phoenix Within wrote:
Queen K wrote:I hope you are documenting all your symptoms now and will keep a log of all your improvements and then knock down the door at the MS Society to make them listen.

I got a friend who's wife has MS, and after seeing all the red tape and stalling, he's convinced that the MS Society has no interest in seeing this procedure come to life in Canada anytime soon.

In his point of view, if people start to get better, and then the MS Society loses their donations
, some people's high end jobs in that organization will be in jeopardy. His explanation is a little more detailed, but that's it in a nutshell.

I hate to say it, but he does have a point.


I couldn't agree more...which is why I encourage all people to stop submitting monies to any MS Societies - let's see how long they can last without the many millions donated each year (half of which goes directly to administration).

People with MS (along with friends and family) are not saying that treating CCSVI is a cure for MS - that's an argument thrown into the pot by neuros and MS Societies.

However, unlike any of the drugs the pharmaceutical companies have to offer, treating CCSVI does provide relief of various debilitating MS symptoms (albeit varied - depending on the severity of the disease...something pwMS are willing to accept).

Here's a link to a paper my sister (who also has MS) sent to me...it's a good read...


'If you read only one peer-reviewed paper in a medical journal, please read this one. Please e-mail it to vascular doctors and interventional radiologists. This is co-authored by Dr. B.B. Lee, one of the premier vascular surgeons in the world, a professor at Georgetown University-along with his colleagues Dr. Neville and Dr. Laredo. There are diagrams and clear explanations of CCSVI in pwMS. This paper explains the congenital nature of the venous lesions in detail. It's all here--this is called science. It is not hope, not desperation, not folly. SCIENCE.'

http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf
"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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