The Alberta MS Society says "We are sorry"

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The Alberta MS Society says "We are sorry"

Postby Onthelake » Sun Mar 27, 2011 5:27 pm

The tide it may be changin'....

http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110326/edm_ccsvi_110326/20110326/?hub=EdmontonHome

"We are sorry"
Updated: Sat Mar. 26 2011 13:59:15

Nahreman Issa, ctvedmonton.ca

A member of the Alberta chapter of the MS Society of Canada is apologizing, saying the society should have been more supportive of the controversial CCSVI treatment.

Speaking to CTV News at the society's 30th annual awards banquet Saturday afternoon, an MS Society spokesperson says they should have listened to the successful stories patients have had when getting the treatment done.

"We are sorry," says Darrel Gregory with the MS Society. "I think we came down too heavily on the side of research and not enough empathy for patients and what they're going through."

Gregory says the organization will focus more on addressing those who went overseas to get the controversial treatment, and to see that patients who haven't can get treated right here at home.

CCSVI is a procedure that opens up the blocked veins in MS sufferers' necks through balloon angioplasty. The procedure is currently not approved in Canada, causing many patients to go overseas to get it done. But the surgery costs thousands of dollars that they would have to pay out of their own pocket.

The MS Society of Canada and its American chapter have pitched in $2.4 million towards CCSVI research. The member tells CTV News that they understand that results for the research being done will take some time before they're released, but that they will push the Alberta government to get clinical trials approved rather sooner than later.


"We want it to be available for people because we know that it works for some people," says Gregory. "Some people have said that it has resulted in an improvement in their quality of life and that's worth something and those stories need to be told."

Gregory also said they will be working with patients who have undergone the procedure to get the proper follow-up care they need. He says that is not happening with a lot of patients now.
Onthelake

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Postby Cece » Sun Mar 27, 2011 6:10 pm

The MS Society's objections and dismissal of CCSVI was brutal. Over the summer, the national Canadian MS Society helped talk the goverment out of funding clinical trials, didn't they? Brutal.

There will be a role for the MS Society as this goes forward, but how do we trust them ever?
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Postby 1eye » Sun Mar 27, 2011 7:00 pm

see below. this one was the same.
Last edited by 1eye on Sun Mar 27, 2011 7:39 pm, edited 1 time in total.
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Postby 1eye » Sun Mar 27, 2011 7:01 pm

Between now and the Canadian federal election a lot of words will be spoken. Words don't save lives. Deliberate delay is calculated death of patients. This will not bring anybody back, and it is up to their loved ones to forgive. It will be very hard to forget.
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Postby Onthelake » Sun Mar 27, 2011 7:31 pm

I for one will never trust them. It is absolutely disgusting what they have not done for us over the past 2 years and is a breach of trust of the highest magnitude. I will watch with sadness as they eat their words over the next several months and years. Oh what might have been, the people who could have been helped. They will never see a cent from me again and millions of others feel the same. They could have been a beacon of hope, but instead they kicked us while we were trying to get up. Shame.
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Postby David1949 » Sun Mar 27, 2011 8:28 pm

I wish I could say I'll never send them another penny, but actually I never did send them a penny. And I'm glad of that.
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Postby Blaze » Mon Mar 28, 2011 7:36 am

This phony apology is about just one thing. Their donations are disappearing--including mine.
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Postby BooBear » Mon Mar 28, 2011 7:43 am

I agree that donations must be significantly lower for the MS Society to issue an apology...that, or the upcoming studies have favorable data and the Society needs to save face.

Either way, never another dime. Never.
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Postby PCakes » Mon Mar 28, 2011 8:35 am

I ask anyone interested to turn your words into actions.
With the upcoming federal election we, 75,000 strong, have an opportunity to make a difference. The current government has turned a deaf ear to our cause until now. Until now, when they need us, and our vote.
The Harper gov't is not stupid. They have done the math. 75,000 times friends and family is a LOT of votes.
It's payback time! It is time to turn our ears and eyes away from their empty campaign promises of action and turn to a woman who has dedicated this past year + to CCSVI. Dr Kirsty Duncan. Liberal MP Etobicoke North, Ont.
Let us stand with Dr Duncan. Vote Liberal!! Put the Liberal party into power. Give Dr Duncan a voice!!!
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Postby 1eye » Mon Mar 28, 2011 9:19 am

Hear, hear. Capital words. 75,000 times friends + families + maybe some caregivers + maybe some refrigerator delivery guys + maybe anybody who will listen. I'm working on my brother, who is a candidate for the NDP, and I'm trying to get it across to Jack Layton.
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Postby Doodles » Mon Mar 28, 2011 9:34 am

The apology is just another manipulative ploy by the MS Society - just like Leona's surveillance of MS patients by the MS clinics. I think they see the science coming at them that proves the Society and the neuros who run the society wrong, they see a significant reduction in revenues (long may that continue), and they are worried. Let's make sure that people are not taken in by them and let's encourage people to donate anywhere but to the MS Society.
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Postby thornyrose76 » Mon Mar 28, 2011 12:50 pm

You're right on, avoid the MS society, avoid, avoid!
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Postby fogdweller » Mon Mar 28, 2011 1:36 pm

Hey, hey folks, easy. As a proud scientific skeptic (in the general sense of the word) I recognize that a big leap forward we have made in our century is the practicing of scientific medicine. We do not rush into a new idea without scientific proof. Very difficult in a disease like MS without a good standard of care and without a satisfying explaination of the disease, but one of the things that the MS socienty needs to do is to express caustion to pwMS not to leap at every explaination that offers hope. There are drugs that do offer some relief (not to me, I have PPMS, and not much, but something) and the best scientific explanation we have going is straight autoimmunity (I don't believe it but that puts me in a minority) so caution and scientific skepticism is absolutely appropriate.

I am a believer; I have had venous angiplasty, and my personal neurologist is positive and intrigued. However he does not advise getting the angioplasty, and it would be inapproprate for him to do so at this time. However he ils positive about the fact that I did go out on my own and get the treatment.

The scientific evidence is coming. I believe that. CCSVI explaints too may things that do not otherwise have a good explanation. The antedotal evidence is piling up, and although not scientifically adequate, it is evidence. However those charged with advising pwMS and allocating scarce money to research issues about MS have a tough job and as believers in CCSVI we should not just dump on them for doing their job cautiously and not necessarily in line with out beliefs.
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Postby Blaze » Mon Mar 28, 2011 1:54 pm

Fodweller, it was a lot more than that! MS Canada served on the CIHR "expert panel" which unanimously recommended against doing clinical trials. MSS snubbed experts like Drs. Haake, McDonald in granting funds for research. Instead, they pandered to Dr. "Hoax" Freedman and others.

They ignored information about CCSVI until CTV broke the story. They only granted funds for research after an outcry for people with MS--and then just for imaging.

Now, they are saying they are sorry?!? Follow the $$$. It's drying up and they're running scared.

MS Canada could show they are truly interested by funding randomized double blind clinical trials proposed by Dr. Sandy McDonald, the only Canadian physician to have trained with Dr. Zamboni. Until they do that, my donation money goes elsewhere.
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Postby BooBear » Mon Mar 28, 2011 2:00 pm

Here! Here!
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