Canadian MS Society lobbies govt' for CCSVI $$

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

Postby Ruthless67 » Thu May 06, 2010 8:17 pm

MrSuccess,

Please don't misunderstand me, I also think this is a tremendous breakthrough. One I have been wanting too.

It's just that during the last few months I've learned so much about the illness we call MS, and how the wonderful, bright and inquisitive minds here at TIMS work together. And also I've read and felt the attitudes that came initially from the MS Societies, and still are. See the post of reneelucia titled, MS Society Dinner. So that part of why I am apprehensive.

I've also gotten quite an education on how the pharmaceutical industry conducts business and while of course worthwhile medications are a by product of that industry, so is GREED, it's insidious and it spreads like a virus. Some of the industries practices are deplorable. And their influence on research trials and the trial outcomes is another reason for my apprehension.

And lastly I'm apprehensive because I've been here at TIMS one less month than you and I wonder how did this all come to where folks with MS are unable to even get tested for CCSVI. How did we lose our doctor patient rights so quickly?

Research money is not easily come by so I want us all to keep an eye on the money!

So I hope too, Mr Success, that this will be the beginning of the turn around in attitudes towards CCSVI research if the government grants $10 million to CCSVI research.

Lora
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Postby eric593 » Thu May 06, 2010 8:44 pm

Ruthless67 wrote: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.



Hi Lora,

Yes, I feel uncomfortable about this too. Why shouldn't we have an organization withOUT ties to top neurologists asking the government for the CCSVI funding so that we can have an unbiased panel consisting of IR's, patients, those already doing CCSVI treatments, etc to decide what kind of research should be done first and what answers we need quickly in order to get this moving.

I'd really prefer this was moved out of the MS Society too. Aren't they the ones that the Colleges of Physicians are relying on to decide that CCSVI testing & treatment is not appropriate for us, by directing the Colleges to NEUROLOGISTS? Isn't that what the MS Society has done "for us", led them to, not interventional radiologists, but to neurologists in order to answer the question whether CCSVI testing/treatment should be a part of our standard of care?

I wish we could eliminate the MS Society as the go-between. Either that, or I think we should call for the resignation of Yves Savoie because he admits that this is an old theory that they didn't bother to validate or eliminate scientifically as a possibility a long time ago when it was first proposed. He's admitting they dropped the ball.

I think we should either have another more independent body deciding where the money goes (or create one and go to the government to seek funding independent of the MS Society), or we should seek to eliminate the top brass at the MS Society for failing in our interests and even in their initial monies they're giving towards CCSVI ($200,000) to the type of studies that really should not be at the top of the list of what we need to find out about CCSVI and MS in order to proceed swiftlly to answer basic questions of safety and efficacy. I think we should call for the removal at the top of the MS Society and their hundreds of thousands of dollars in salaries that they've been paid.
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Postby frijkaard » Thu May 06, 2010 9:08 pm

AMEN to your proposal![/quote]
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Postby Someday » Thu May 06, 2010 9:28 pm

Another Amen to Eric593's proposal.

Who dropped the ball indeed? We have a right to know, don't we...after all, our health has deteriorated in the years that were allowed to lapse without any research or studies being done on CCSVI. And they should be held accountable, shouldn't they?
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Postby jackiejay » Fri May 07, 2010 3:49 am

they should be held accountable but check around....there is no accountability anywhere these days.....
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Accountability!

Postby Chrystal » Fri May 07, 2010 7:29 am

Jackiejay,

Here's someone else calling for accountability...

http://canadafreepress.com/index.php/article/22838

Whether the vested interests in the medical and drug communities really want a cure.

Is there a conspiracy to keep Canadians sick?

By Bill McIntyre Thursday, May 6, 2010


I have never considered myself to be a conspiracy theorist but recent activities involving health officials and organizations supposedly dedicated to the curing of Multiple Sclerosis (MS) and cancer have given me cause to think maybe I’m wrong.

A CTV report involving the coverage of protests by MS sufferers who are being denied what is called the Liberation Treatment in Canada, using an Italian discovery by Italian vascular surgeon Dr. Paolo Zamboni that is helping patients in that country made me sick.

I guess the Canadian medical establishment considers him a quack or something. Maybe they think he’s a hockey player or rink rat because of his name.

The treatment I am referring to involves the opening of constricted arteries in the necks of MS sufferers that has been shown to dramatically ease or eliminate the symptoms of the disease.

Enter Health Canada, or should that be renamed Sickness Canada, and various medical groups arrogantly proclaiming that several years of testing need to be done. Really? I wonder what they would be saying if they were afflicted with MS or their mothers or fathers or brothers or sisters were suffering from it. They would be on flights to Italy immediately if not sooner.

In any event enter Dr. Yves Lamontagne of the College of Physicians in Quebec who told CTV Montreal. “Wait a bit, try some conventional treatment, and if in a year or two or six months we have full proof that this is miraculous, of course we would do it.” Hey doc, conventional treatments apparently don’t work. But then he or his mother obviously don’t have MS.

This made me wonder whether the vested interests in the medical and drug communities really want a cure. After all, what would they do without their MS patients? And what if all these people no longer needed their ineffective drugs? My god, drug companies would lose profits.

As I watched this newscast I couldn’t help but think that the Canadian medical establishment would rather see people suffering than giving them an opportunity for hope and normalcy.

Applying the same logic (I am sure the medical professionals would call it illogic) what about other diseases? There are a large number of people in Canada, and I suppose the U.S., who believes a cure for cancer has been around for a long time but is being suppressed. You can compare it to the auto and oil industries suppressing the 100-mile-per-gallon carburetor technology. In light of this MS situation, it would not surprise me.

Did you know there are more people in the world making money off cancer than the numbers of people who have various forms of the disease? Can you imagine how many billions of dollars are spent on “research” each year with no sign of cures on the horizon? Cancer and other diseases are money machines built on the suffering and corpses of their victims.

Recently I tried to research how much money is spent on cancer research each year around the world. Let me tell you that getting an answer is absolutely impossible. I have never seen such a confusing, misleading and outright obscure bunch of statistics on the web as those I found in my research.

In short, you cannot get an answer because the medical and drug establishments don’t want you to get an answer.

Think about it. Cancer fund raising and so-called research have to be one of the largest businesses in the world. There are branches in every country, labs everywhere, scientists galore (making a pretty good living thank you very much) and fund-raising parasites who don’t want to work themselves out of a job.

Meanwhile CTV reported that later this week, representatives of the MS Society of Canada, including its president, Yves Savoie, will be on Parliament Hill, speaking before the Commons Subcommittee on Neurological Disease, part of the Standing Committee on Health, to request more money from the federal government for further studies on CCSVI..

Now isn’t that nice? They want more studies and, of course, more money.

Why not send some MS patients to Dr. Zamboni so he can perform the surgery then see what happens? I guess that just makes too much sense and would deprive the MS Society of more cash for its executives.

Consider the institutions kept alive by cancer. There are clinics, testing labs, hospitals, doctors, nurses, administrators, equipment manufacturers, drug makers, event organizers and on and on and on. All these people make their living off cancer.

Where then is the incentive to find a cure? In fact, where is the incentive to find a cure for any disease? Given the money involved, there isn’t one.

I believe that if the cancer research industry had 100 times as much money as they now have we would still be hearing the same old BS that cures are “just around the corner” or “we are extending the lives of cancer patients.”

It’s time we held all these people to account for their lack of results. It’s time for people to demand answers and its time for the cancer and related industries to be forced to come clean about where the money is really going.

It’s also time to tell the medical professionals to take their condescending, arrogant, pitiless attitudes and stuff them where the sun don’t shine.
Enough already.
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10 000 000

Postby BELOU » Fri May 07, 2010 12:03 pm

10 000 000$ ? I don't want to be pessimistic but I bet it's going to take at least 12 months before they get the money and another 12 months before they do something with it (CCSVI).

I've paid around 40% of tax for the last 12 years and every time I neeeded care I was denied. 6 years ago I needed a MRI, I had to pay 1000$ because I was not able to get an appointment through the public system. Now I want to get tested at Montreal... The shutted down the clinic. Let me tell you that I don't want to rely on MSS or goverment to open up my veins. I'm scheduled in Poland and I wish I will not have to go there but... I'm not waiting 2 years that's for sure!

Angry tax payer having MS.
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Postby PCakes » Fri May 07, 2010 12:24 pm

belou.. what you say is too sad and too true .. couple of questions.. 1) i just read 'neurodocs' response to the most recent Dr Brandes article.. he calls treatment before trials "a potential waste of healthcare dollars".. ok..fair enough but why shutdown the private clinics? I don't need someone policing how i 'waste' my own money.. 2) it's very good that the MS society is petitioning for this money and i agree with you..this will be a painstaking process...so why are the funds already collected by MSS not considered? If the answer is that they are already allocated.. (address labels) so were my holiday funds when my roof sprung a leak..
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Postby BELOU » Fri May 07, 2010 1:15 pm

We can get Botox injections, crappy ''get slim'' therapies and other craps but can't get tested for a critical condition such as CCSVI because Le collège des médecins don't want us to spend money on something not proven? Thanks guys! You really care about MSers...
Thanks again College des médecins!
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Postby Brightspot » Tue May 18, 2010 11:58 am

As a Canadian tax payer I am horrified by the idea of 10 million dollars being handed over to the MS Society for research.

They have inisted that the research they fund NOT INCLUDE ANY INTERVENTION.

They continue to deny the existance of the research already completed.

If 10 million dollars could be handed to someone like the vascular specialist, Dr. Sandy McDonald for a study which involves treatement that would make sense. (see his testimony at the Parliamentary sub committee hearing on CCSVI)

I have given my opinion regarding this to the subcommittee.

Canadians with concerns please send your opinion on this to the subcommittee via email to the address below.

THE PARLIAMENTARY SUB COMMITTEE ON NEUROLOGICAL HEALTH
CARE OF Christine Holke David, Clerk of the Standing Committe on Health
email HolkeC@parl.gc.ca
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Postby eric593 » Tue May 18, 2010 12:27 pm

Brightspot,

Isn't it easier for us to remove the top brass at the MS Society and put in someone more willing to accept and build on existing research?

I would think that it would be easier to change the decision-making at the MS Society (as MSer's have already changed their stance on CCSVI) than prevent the government from giving them money. We don't want to stop the government, do we? That seems like an action that would cut off our noses to spite our faces. We NEED that money for research, but what we want is more progressive research done.
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Postby PointsNorth » Tue May 18, 2010 12:40 pm

Eric/Brightspot,

Perhaps we need to encourage doctors/clinics (Dr. McDonald/False Creek Surgical) to put forth proposals to government to test/treat?

Attention: PARLIAMENTARY SUB COMMITTEE ON NEUROLOGICAL HEALTH
CARE OF Christine Holke David, Clerk of the Standing Committe on Health

Hello Christine,

I've had MS for seven years and I've been following CCSVI developments with great interest since late last year. Although they claim otherwise, the MS Society has not offered any leadership on issues related to testing for or treatment of CCSVI. I am very CONCERNED that they will not manage the money they are requesting appropriately. Nearly all of the doctors on the medical advisoty committees are neurologists who lack the vascular expertise to direct such an effort. I would hope that qualified doctors/clinics that are prepared to test/treat MS patients will come forward.

Thankfully Yours,

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Postby Brightspot » Tue May 18, 2010 2:01 pm

MrSuccess , Eric and others
Perhaps you are unaware of the attempts made by many persons with MS to engage with the MS Society on both local and national levels over the past several months and pursuade them to act in our best interest.

We have sent them research, which they deny.

We have asked them to add vasculars specialists to their medical advisory committee with they refuse to do.

We have told them locally and nationally that we want their support in lobbying for immediate screening and treatment based on published scientific studies which they refuse to do.

Instead the society actively provides misinformation locally and nationally to members seeking advice.

Neurologists who make up their medical advisory committees actively prevent our access to the services of vascular specialists even when we have evidence of severly compromised circulation to our brains.

I believe I heard one of their medical advisors, (Dr. Freedman) saying on CBC radio that it costs millions of dollars to do a study. The society has offered to provide 200,000 dollars per study. Are my math skills slipping, or is that less than 2 percent of what Dr. Freedman says would be required??

I do not want them to receive any of my tax dollars.

The CEO of the organization admitted being unaware of a document published months ago by an international organization of vascular specialists declaring CCSVI to be a vascular condition and providing protocol for testing and treatment.

It would be very foolish indeed to entrust this organization with any money whatsoever for research.

There are specialists in vascular medicine such as Dr. McDonald (see his testimony from the parliamentary sub committee on health) who could use the money to screen and treat persons at risk of CCSVI, as part of a study.

Ruthless67 and Someday
Thanks for your sensible posts.

Pointsnorth
Thanks for sending your recommendation to the parliamentary subcommittee.
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MacLeans' Anne Kingstone Interview

Postby Chrystal » Tue May 18, 2010 9:39 pm

A fellow MSer forwarded the link below to me. Listen to this entire interview with Anne Kingstone, the journalist who wrote the "MS Cure" article in MacLeans on May 7, 2010.

A.K. talks about her half-an-hour conversation with the MSSC CEO & Pres and some very surprising statements he made which she was not able to include in her article. Basically, he said that he did not support a surgical solution to CCSVI, but rather a pharmacological one...she was shocked as well.

http://www.blogtalkradio.com/omario/201 ... bout-ccsvi

www.blogtalkradio.com
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Postby MrSuccess » Tue May 18, 2010 9:54 pm

Brightspot - I have been following CCSVI from day one .What an incredible story. Was it you that joined in the fun after seeing the W5 story ?? If so .... you have missed alot of extremely important information.

If I may, I'll try to condense it all [ not likely ] to enable you to understand the difficulties of advancing CCSVI intervention.

It is my opinion that not all MS-CCSVI doctors are all on the same page in regard to how CCSVI treatment should proceed.

Our famous Dr. Zamboni ..... has stated his concern with stent placements. I am 99 % sure Dr. Zamboni uses angio only.

Other CCSVI interventionalist doctors have expanded [ pardon the pun ] Professor Zamboni's discovery ..... and installed stents in pwMS.

In one solo instance ..... the stent migrated into the patients heart . It was retrieved - fortunately - with open heart surgery.

This is why so much of what is to become of CCSVI intervention .....involves safety procedures. And I have no problem with taking these steps . That is what Clinical Trials will determine.


Yes , I am aware that Dr. Simka is placing stents ..... with apparent success ..... he may well be the worlds foremost expert in this procedure .


With the exception of Dr. Zamboni :!:





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