Canadian MS Society lobbies govt' for CCSVI $$

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Canadian MS Society lobbies govt' for CCSVI $$

Postby cheerleader » Wed May 05, 2010 12:24 pm

Dear Canada--
it appears you are being heard. This is thanks to your efforts and rallying--

MS Society Lobbies Government for $10 Million for Funding Into CCSVI and MS Research
OTTAWA, ONTARIO--(Marketwire - May 5, 2010) - The Multiple Sclerosis Society of Canada is calling on the government to provide $10 million for research into chronic cerebrospinal venous insufficiency (CCSVI) and MS.

The request for funding comes as Canadians with MS continue to seek diagnostics and treatment for CCSVI elsewhere, paying out-of-pocket for tests and experimental therapies that could be provided in Canada.

"The safety and health of people living with MS is our primary concern," says Yves Savoie, president and CEO of the MS Society. "The Government of Canada can play a leadership role in addressing the needs of Canadians living with MS by funding research, including clinical trials in CCSVI and MS. Doing so will both advance research and provide safeguards to those seeking treatment."

The Government of Canada has acted quickly in the past to respond to health crises with innovative research, such as its 2009 investment of $6 million to support research to find alternative medical isotopes.

"The MS community has spoken. They want access to diagnostics and treatment for CCSVI in Canada," says Linda Lumsden, chair of the national board of directors for the MS Society. "The MS Society has already committed to funding CCSVI research and now we are calling on the Government of Canada to do its part."

Tomorrow, Lumsden will formally ask Minister of Health Leona Aglukkaq for the funding. The MS Society proposes that the $10 million be appropriated to the budget of the Canadian Institutes of Health Research and earmarked for CCSVI research.

MS Society representatives are in Ottawa for the next two days meeting with various Members of Parliament to advocate on key MS issues.

"It is obvious that the relationship between CCSVI and MS requires further investigation," says Savoie. "This funding request will give researchers the tools to examine both the prevalence of this condition and the potential benefits of treating people with it."

In late 2009 the MS Society of Canada announced a special research competition for CCSVI related studies. The results of this competition will be announced on June 14th, 2010.

"I fully support the MS Society's efforts to lobby the government for research into CCSVI and MS," says Joan Ozirny, a volunteer board member with the MS Society's Alberta Division who lives with MS. "Increased research funding is the only way we'll get closer to unraveling this complicated disease."

As part of its overall lobbying effort, the MS Society, in collaboration with other Canadian health charities, is calling on the federal government to increase overall funding to the CIHR annually to a level equivalent to 1% of total health spending in Canada. This amounts to $1.8 billion based on $183.1 billion in health care funding as of 2009.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby babiezuique » Wed May 05, 2010 12:49 pm

You helped in this a lot Cheer! You iniciate all of this big ccsvi america thing...

THank you very much...

I'm proud to be canadian!
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Postby mangio » Wed May 05, 2010 12:53 pm

Merci beaucoup Yves.
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Postby jimmylegs » Wed May 05, 2010 3:06 pm

and meanwhile in the same radio news piece that they announce that, radio news announcers are still saying the toronto lobbyists are calling this 'controversial procedure a cure'..
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Postby TFau » Wed May 05, 2010 6:03 pm

Wow - this is fantastic!
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Postby Ruthless67 » Wed May 05, 2010 10:04 pm

MS Society Lobbies Government for $10 Million for Funding Into CCSVI and MS Research

This is really Great News.

But I just have to say that personally I still want my donations to go DIRECTLY to the CCSVI Alliance or the many CCSVI Research projects currently struggling to battle the various obstacles thrown their way. They are the original Doctors, Surgeons, Radiologists and Researchers who, the way I see it anyway, REALLY are interested in helping people ravaged by Multiple Sclerosis. Some have gone so far as to put their lives and reputations on the line for us. And I feel pretty confidant that close to 100% of the monies I donate to them are used directly to further our knowledge of CCSVI and it’s relevance to MS.

I have underlined a statement in the quote below that I feel we should all read. I just hope that the above lobbying is not “to get the fox into the hen house”. I would rather the government issue the grants directly to the research facilities and not give the money to the MS Society to use as they see fit and then dole out what is left over to their sponsored researchers of choice.

Julian Burnside is a prominent Australian barrister. In 2009 he represented the lead plaintiff in a class action against Merck concerning the effects of Vioxx. This is an excerpted version of the keynote address he gave at the Royal Australian and New Zealand College of Psychiatrists Congress in Adelaide on 28 May 2009.

“Drug companies sponsor a great deal of research, and no doubt a good deal of that research has very useful outcomes. Nevertheless the reports show that the drug company sponsored research is four times as likely to have an outcome favorable to the sponsor than research that is independent.

Authors of company-sponsored research are more than five times more likely to recommend the drug company’s products than are independent authors. Researchers with industry connections are more likely to favor the products of the company that sponsor them. An Australian survey revealed that over 12% reported that industry staff wrote the first draft of articles published under the names of the medical specialists. Between 5 and 7% reported that unfavorable findings were either delayed or censored out of the reports, which were supposedly written by the authors. A smaller number reported complete concealment of adverse results.”
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Postby Ruthless67 » Wed May 05, 2010 10:33 pm

Reneelucia said on her thread called,

ms society dinner

"Wow...went to my first ms society dinner to listen to Dr. Cohan, the director of the ms center in Portland talk. It was pretty basic stuff until someone asked him about CCSVI. Aside from making fun of Zamboni's name he said that "Zamboni claimed to cure everyone, including his wife with ms" He said the study at the university of buffalo was rigged because the results depended on how much pressure the tester would put on the vein.
In other words, he knows nothing or he lied.
I don't mind that the ms society disagrees with this approach but at least the physicians could get their facts straight.
the free food wasn't bad."

This is another reason or example of why I’m not so keen on the MS Society receiving the $10 million dollars. I mean if the Director of the MS Society in Portland Oregon, Dr. Cohan, can’t do better than to bumble through the incorrect statements quoted above. Which obviously he got some information from somewhere but didn’t pay enough attention to it to be able to make an intelligent response, be it negative or positive. He answers indicate he hasn’t read and understood one thing about CCSVI.

And that to me is not someone I feel comfortable about having anything to do with CCSVI research funds in any way, shape or form. And I pray he is not the typical MS representative. And I can't believe the MS Society hasn't done a better job at educating their people about CCSVI. Especially those who go out and do public speaking engagements. There are some very good descriptions of the CCSVI Theory that would fit on a single sheet of paper. And that's with a diagram as well!!!!

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MS Society

Postby PointsNorth » Thu May 06, 2010 8:48 am

Hi Lora,

I concur completely. Giving money to the MS Societies is like giving money to the government - a black hole. Not that I'm a budding philanthropist - I haven't worked full-time in years. I like the "think globally, act locally" mantra, but I'll be damned if I support the MS Industry at the local level. I want trials headed by IRs and vascular people - not 'old guard' neuros.

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Postby Ruthless67 » Thu May 06, 2010 9:02 am

Hi all,

There is only so much "research funding" to go around. Do Canadian's REALLY want the MS Society to get the "Lion's Share"? I slept on this and I'm still having some personal turmoil over the various quotes below.

Dr. Cohan, the director of the ms center in Portland, said the study at the university of buffalo was rigged because the results depended on how much pressure the tester would put on the vein.

Julian Burnside wrote:Authors of company-sponsored research are more than five times likely to recommend the drug company’s products than are independent authors. Researchers with industry connections are more likely to favor the products of the company that sponsor them.

Mark Freedman

"I think there are going to be millions of dollars spent now to follow a hoax.... "

Richard Smith, Editor of the British Medical Journal

“How did we reach a point that so many doctors will not attend an educational meeting unless it is accompanied by free food and a bag of goodies? "

Henry Miller

"it is possible that the disease lies buried somewhere in these lengthy protocols waiting to be found by someone ingenious enough to unearth it"

If the Canadian Government see’s it’s way to providing research funding for CCSVI I feel the health department, or whatever branch of government it is that oversees these things needs to be the one making the independent decisions about where those funds are dispersed.

The MS Society has already spent their way through millions of dollars, many times over, in the name of research. It’s time to give the funding DIRECTLY to the independent researchers and institutions, the individuals who have been ingenious enough to unearth and pursue this interesting theory. What we need is research, research and more research, but lets have it done by open minded researchers, NOT the naysayer’s!

Just my humble opinion and personal rant,

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scientific research needed on ccsvi

Postby 1eye » Thu May 06, 2010 10:13 am

yes and there should be simultaneous treatment of ccsvi for all who want it, using the best practices promulgated by doctors who have developed and refined this treatment, plus any others they might develop that are improvements not just in safety, but in measurable results. i don't have any confidence in the ms society, but my federal masters will help me to feed the hand that bites me.

they are unwilling to risk offending their very powerful corporate sponsors, and ape the Neurologists' talking points whenever possible. they are lies. ccsvi treatment is clinically proven to far exceed anything the neurological community has to offer. the brain specialists are also unwilling to cooperate with what constitutes a grave threat to perks and benefits from the same sponsors, and to their clinical control over patients, many of whom are seen once a year until they become mortality statistics. wives of the specialists often accompany them on these corporate-sponsored jollies that they are always flying to.

ccsvi treatment with percutaneous balloon venoplasty is less risky than an average tooth extraction. It is done under local anesthetic and takes sometimes only an hour to complete, it may not do anything immediately, but why wouldn't brains benefit from something done for similar reasons in other major organs? in the long run if stenosis remains open, it is very likely to prove beneficial. And that is between the doctor and the patient.

the 'ms' society can be used to organize this massive effort and triage the cases, or at least hand out numbers. they have not shown themselves capable of organizing scientific research. why would they be? are they the best we could find, for a global research campaign? and organizing treatments to be available close to where needed? maybe that much. but who am i to say? nobody asked me if they could spend my money.

anyway it's too late. they had a meeting with a neurology committee in parliament at 7AM today. gotta get up pretty early to catch $10M. i'm gonna have a hard time watching Grey's Anatomy now.
This unit of entertainment not brought to you by FREMULON.
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Postby MrSuccess » Thu May 06, 2010 11:04 am

Lora- this is a tremendous breakthrough . One all have been wanting.

I , for one , am going to be giving the benefit of the doubt. And there are doubt's a-plenty.

Mr. Savoies intentions and statements are clear and strong.

The MS Society that Mr. Savoie heads , has a huge responsibility to MS people. They must act-spend research $$$$ with great caution , as their every move is documented and examined. The public has FULL access to review everything they do. As does the Federal Government of Canada.

Within the MS Society is a large VOLUNTEER group of medical professionals that safeguard and award worthy MS research.

As such ...........I trust their judgement. :!:

Should Mr. Savoie be successful in obtaining the funding he is asking of the Canadian Government .....I am confident that the money will be spent on CCSVI research .... as it is a specific request. It will be monitored.

The MS Society is an established entity . They have a frame work .

As noble as it is , the other organization you mentioned has no history , fiscal responsibility , or track record. Giving $$$$ to it , may be risky -at this point in time - and I say that with the greatest respect and admiration for those that have established it. Might I suggest this organization ask for funding from the MS Society ? :idea:

For now ....let's see how this fantastic news pans out .... and save judging peoples intentions ....before seeing what unfolds . :wink:

What a great day for MS CCSVI research and solutions. :) :) :) :) :)

Thankyou Dr. Zamboni

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Postby PCakes » Thu May 06, 2010 11:34 am

Cheerleader/ Joan Beale.. just my opinion and with respect to the early pioneers and those you lean on.. you didn't just 'help' you made this happen!!
You are an inspiration.. thank you.

It's another step.. but it's a BIG one... :) next ...treatment 'hand in hand' with trials.
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Postby Someday » Thu May 06, 2010 12:09 pm

The MSSC should have appealed for this money to fund CCSVI research years ago. The recent letter below - also appealing for donations - states that CCSVI is an old why wasn't this old idea researched before?

We have already lost years because they chose not to reseach CCSVI until after the W5 story broke and they received pressure from patients and the donating public.

We shouldn't have to pay with our health and lose more years while they do their research (hopefully with vascular specialists, proper equipment and proper protocol) the testing and treatment alongside research.

April 15, 2010 Letter from Multiple Sclerosis Society of Canada – Multiple Sclerosis International Federation, seeking donations.

“Dear Mr. ___________,

The Multiple Sclerosis International Federation has an enormous responsibility. We provide essential support to our member societies who in their turn offer help and services to people affected by MS. We work with our 42 member societies worldwide and the wider MS research community to offer information about significant and important advances in research and play a direct role in stimulating research into MS by facilitating global cooperation.

An example of where international cooperation is crucial is when new lines of research suddenly move to the fore. No doubt you will have heard or seen the media reports about chronic cerebrospinal venous insufficiency (CCSVI) which sparked a flurry of media attention at the end of 2009. Sounds like they're referring to CCSVI as a new line of research, here.

CCSVI revives an old idea that abnormal venous drainage of blood from the brain and spine might set off the inflammation and immune-mediated damage that are characteristic of MS. As with all suggestions and approaches there are important questions to be answered: Are they promising? Are they based on solid research? What further research would need to be undertaken to decide if it is an avenue to the future or a diversion?

In the case of CCSVI, we called research experts of our key member societies to an urgent conference call to explore such questions, share expertise and decide on what approaches would be best. Now, several MS societies, including the MS Society of Canada , have issued calls for research institutes to come forward with requests for funding for further research to look more closely into CCSVI.

MS is a global issue. The more we can facilitate such international cooperation in research the more hope there is that one day we will know cause and cure!

Being able to coordinate responses to new developments and offer an impartial, informed view to our members and to people living with MS are important aspects of what we do. Such work is made possible with your support.

We have published the Atlas of MS which maps the incidence and prevalence of MS around the world providing a roadmap for future advocacy and development work. 2009 saw the first ever World MS Day, which included all manner of events around the world to raise awareness and funds for MS.

We have been hard at work developing programmes and furthering research that will bring us closer to the goal we seek – a future without the threat of MS.

We urge you to give your support for MSIF as we try to reach that goal, together.

On behalf of MSIF, our member societies, and the more than two million people around the world who live with MS, thank you for considering our request.

Kindest regards,

Alistair M. Fraser
Honorary Life Board Member

David L. Torrey
Honorary Life Board Member
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Postby Someday » Thu May 06, 2010 12:12 pm

PCakes, you are so right. Joan/Cheerleader, you are our heroine. Because of you and all that you have done and continue to do, we will hopefully soon have relief from symptoms and an improved quality of life.
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Postby jackiejay » Thu May 06, 2010 7:08 pm

I think it's great that the MS society is lobbying for $10 million from the government....but are they also going to allocate more of their own money to the research projects being awarded this far as I know each project is still getting $100,000 for 2yrs.....they've been taking a lot of heat for not stepping up to the plate from Dr. Lorne Brandes, CTV etc. etc. ....according to Charity Intelligence, over $60 million is given to MS charities each year......I hope they haven't spent it all on address labels (I've got enough, thanks)....regardless, it's still great that they have put forward this motion...let's hope for the best.
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