In Search of Evidence-Based Policy

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

In Search of Evidence-Based Policy

Postby scorpion » Wed Apr 27, 2011 9:16 am

Here is the entire article but I posted the only part that was relevant to CCSVI:

http://www.am770chqr.com/Blogs/RobBreak ... D=10230660



In Search of Evidence-Based Policy Another area where a well-meaning effort to help people appears at odds with the scientific evidence is the so-called “Liberation Treatment” for multiple sclerosis (MS) based on Italian researcher Paolo Zamboni’s theory that the disease is caused by vein blockages, dubbed CCSVI.

Many Canadian politicians have taken an unusually active interest in this. Alberta committed $1-million to a study of the procedure, and other provinces promised funding for clinical trials – despite the Canadian Institutes for Health Research (CIHR) warning against doing so. The federal Liberals even criticized the Conservatives for following the CIHR’s advice.

However, many subsequent studies have found no correlation between these blockages and MS. So far no one has replicated Zamboni’s findings.
A large study this month out of the University of Buffalo found CCSVI in 56 per cent of MS patients, and 42 per cent among those with other neurological condition. It was also present in 23 per cent of healthy patients. The authors suggest that MS might be causing CCSVI, but conclude the reverse is unlikely.

More research is needed, but so far the scientific evidence is not matching the enthusiasm of many policy makers. While the door should not yet be closed on this theory, we should consider the risks of devoting great amounts of resources into a theory that might not pan out.
Many hopes were raised by Zamboni’s theory, but wanting it to be true does not make it so. As disappointing as it may be, we need to heed the evidence.

As we’ve seen, though, when the evidence clashes with our hopes, our fears, or our long held beliefs, it can be easy to ignore.
That’s no excuse for policy makers and politicians. An improvement on the status quo is not too much to ask.
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Postby 1eye » Wed Apr 27, 2011 11:22 am

O. M. G. I read it in Rob Breakenridge's latest Calgary Herald column, so it must be true...

I realized today: you can't fix stupid. My own personal support worker tells me she voted early, and she voted Conservative. I figure it'll be like it was in that bar in the summer of 1974 in Idaho when I sat with all those farmers drinking beer and watching Nixon resign.

In spite of how well he's doing now, you won't be able to find one who voted for him.

Somebody told me women aren't stupid enough to fall for Harpo. I think both genders are equal.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby ozarkcanoer » Wed Apr 27, 2011 12:06 pm

Evidence based science is important. The new Pulitzer prize winning book : "The Emperor of all Maladies" (about the history and science of Cancer) is a fascinating book about the successes and follies and politics behind Cancer research and treatment. I'm almost through with this book and highly recommend it for any one on this board. Hint : how many women get radical mastectomies today as compared to 45 years ago ? I am an intellectual agnostic when it comes to CCSVI but I have 2 stents. Go figure :)

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Postby scorpion » Wed Apr 27, 2011 5:56 pm

ozarkcanoer wrote:Evidence based science is important. The new Pulitzer prize winning book : "The Emperor of all Maladies" (about the history and science of Cancer) is a fascinating book about the successes and follies and politics behind Cancer research and treatment. I'm almost through with this book and highly recommend it for any one on this board. Hint : how many women get radical mastectomies today as compared to 45 years ago ? I am an intellectual agnostic when it comes to CCSVI but I have 2 stents. Go figure :)

ozarkcanoer


Do oyu know who the author is?
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cihr is the opposite of evidence

Postby 1eye » Wed Apr 27, 2011 6:29 pm

"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby 1eye » Wed Apr 27, 2011 8:42 pm

Rob Buckman's review of it in the Globe and Mail says, like the Charge of the Light Brigade it advances in the wrong direction. Shall I start reading it at the end? :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Scorp est al

Postby Gordon » Fri Apr 29, 2011 12:18 pm

Blah Blah Blah
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Re: In Search of Evidence-Based Policy

Postby willowford » Mon May 02, 2011 6:41 pm

scorpion wrote:
In Search of Evidence-Based Policy Another area where a well-meaning effort to help people appears at odds with the scientific evidence is the so-called “Liberation Treatment” for multiple sclerosis (MS) based on Italian researcher Paolo Zamboni’s theory that the disease is caused by vein blockages, dubbed CCSVI.

Many Canadian politicians have taken an unusually active interest in this. Alberta committed $1-million to a study of the procedure, and other provinces promised funding for clinical trials – despite the Canadian Institutes for Health Research (CIHR) warning against doing so. The federal Liberals even criticized the Conservatives for following the CIHR’s advice.

However, many subsequent studies have found no correlation between these blockages and MS. So far no one has replicated Zamboni’s findings.
A large study this month out of the University of Buffalo found CCSVI in 56 per cent of MS patients, and 42 per cent among those with other neurological condition. It was also present in 23 per cent of healthy patients. The authors suggest that MS might be causing CCSVI, but conclude the reverse is unlikely.

More research is needed, but so far the scientific evidence is not matching the enthusiasm of many policy makers. While the door should not yet be closed on this theory, we should consider the risks of devoting great amounts of resources into a theory that might not pan out.
Many hopes were raised by Zamboni’s theory, but wanting it to be true does not make it so. As disappointing as it may be, we need to heed the evidence.

As we’ve seen, though, when the evidence clashes with our hopes, our fears, or our long held beliefs, it can be easy to ignore.
That’s no excuse for policy makers and politicians. An improvement on the status quo is not too much to ask.



I've realized no matter what a government does, someone will complain. There is just no winning with us. If they invested the funds to CCSVI early on, people with other conditions can complain "what about us? we have promising research coming out too!" (there's lots of new advances in other diseases everyday- just don't get so much misinformed press).

Say, the liberals invest tons in CCSVI research early on (now) and conservatives oppose this move:

Fast-forward 10 years: CCSVI now known (by lots of studies) to be irrelevant in curing MS--> liberals look stupid for investing so much so early on before having enough data, conservatives look like good/reasonable leaders

Alternative fast-foward 10 years: CCSVI (or some variation of it) CURING MS (or at least treating it somewhat) --> liberals look like saviors, conservatives look like a bunch of jerks for opposing early funding

This is why only fortune-tellers can ever become popular politicians!
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