Politics, not science, pushing MS treatment

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Motiak
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Post by Motiak »

I think the majority of us are more in the know of what's going on with CCSVI than that author (ex: him using Doepp's study as proof against CCSVI when Zamboni put out a response to that study showing that it indeed proves CCSVI). I have no doubt there are politics on both sides of this issue but articles like this are pretty pointless. We'll just have to see how the scientific evidence plays out over time.
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scorpion
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Post by scorpion »

Agree with this part:

There is a process for determining the scientific validity of a medical hypothesis and for determining the safety and efficacy of a medical procedure.

Political interference and grandstanding have no place in the equation. Let's hope for less of that in 2011.

Read more: http://www.calgaryherald.com/health/Pol ... z18mPmE5UC
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Billmeik
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Post by Billmeik »

The German researchers even used the same Doppler screening method as Zamboni.

R
actually no there were large problems with methodology. This issue was basically resolved at ectrims this year when doep stated he had no proof of ccsvi but ms patients in the upright position had notably bad flow through the veins. This is proof of ccsvi.
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Billmeik
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Post by Billmeik »

The German researchers even used the same Doppler screening method as Zamboni.

R
actually no there were large problems with methodology. This issue was basically resolved at ectrims this year when doep stated he had no proof of ccsvi but ms patients in the upright position had notably bad flow through the veins. This is proof of ccsvi.
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Billmeik
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Post by Billmeik »

really it's politics not science that is guiding the entire ccsvi process in canada. when I heard about ccsvi I was fine. Now I have a numb hand and walk like a drunk. In my mind this is because doctors in canada were blocked from extending basic care. Is someone liable if they prevent you from helping yourself? Well, if you're on a busy highway and someone prevents you from getting off so you get hit by a cars, then yes the person who blocks is liable. In my opinion, the same is true when a body prevents you from seeking self help. They are liable, and will be held up as so.
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Blaze
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Post by Blaze »

The editorial quotes studies which question CCSVI, but makes no reference to those which support it.

Dr. Tom Feasby, Dean of Medicine at the University of Calgary points to the need for randomized, blinded trials. Dr. Feasby is the neurologist who diagnosed me with my very first symptom 26 years ago. He moved to Calgary a few years later, but I still have great respect for him.

Dr. Sandy MacDonald has been ready for months with a team of interventional radiologists, vascular surgeons and neurologists to do one of the trials Dr. Feasby says is necessary.

Politics, both in government and the medical community, seem to be preventing Dr. MacDonald from getting approval and funding to do so.

For example, no one who had spoken publicly in favor of CCSVI was permitted to serve on the CIHR panel which recommended against clinical trials in Canada. Yet, physicians who had publicly spoken against CCSVI were members of the panel.

That sounds pretty "political" to me.

The Society of Interventional Radiologists in their statement earlier this year said "SIR recognizes the challenge and the potential opportunity presented by promising early studies of an interventional approach to the treatment of MS. SIR is pleased that public advocacy groups have pushed the medical community forward to meet this challenge..."

I think the Calgary Herald and the rest of Canada can expect that advocacy to continue through 2011 and beyond. I hope the new year will bring approval and funding for Dr. MacDonald.
concerned

Post by concerned »

Billmeik wrote: when I heard about ccsvi I was fine. Now I have a numb hand and walk like a drunk.
CCSVI is only for treating things "such as fatigue, memory and cognitive deficiency, etc caused by venous stenosis.", according to Dr. S.

I'm not sure it would have helped a numb hand.
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CCSVIhusband
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Post by CCSVIhusband »

concerned wrote:
Billmeik wrote: when I heard about ccsvi I was fine. Now I have a numb hand and walk like a drunk.
CCSVI is only for treating things "such as fatigue, memory and cognitive deficiency, etc caused by venous stenosis.", according to Dr. S.

I'm not sure it would have helped a numb hand.
it might not have - though it also has relieved that symptom of "MS" in some people treated for CCSVI fatigue, memory and cognitive deficiency, etc caused by venous stenosis. I guess they were the lucky ones who CCSVI did more than just treat those symptoms.

Guess he won't know since he/she can't be treated in Canada (I've gathered that's where he/she is from). EDIT - I'M TALKING ABOUT BILLMEIK FOR THOSE OF YOU WHO DIDN'T GET MY REFERENCE.

I'm not trying to pick a fight moderators ... just presenting facts. I think board readers should be aware these things HAVE indeed happened!

It just happens the person I'm responding to presented information I have a rebuttal to.
concerned

Post by concerned »

You should have quoted something he said rather than something I said if you were responding to him. That's the usual process on message boards.
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CCSVIhusband
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Post by CCSVIhusband »

Not when the topic I was discussing - whether CCSVI would have treated numbness (potentially) in addition to fatigue was the response I had. Which was your post.

If I quoted his it would have looked out of place.


:)
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scorpion
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Post by scorpion »

CCSVIhusband wrote:Not when the topic I was discussing - whether CCSVI would have treated numbness (potentially) in addition to fatigue was the response I had. Which was your post.

If I quoted his it would have looked out of place.


:)
As I said before the tough part is answering whether the " improvements" were a result of the natural process of the individuals MS, placebo, or the treatment itself. I think the fact that MS is different for everyone is one of the toughest challenges facing any new MS therpay.
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CCSVIhusband
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Post by CCSVIhusband »

scorpion wrote:
CCSVIhusband wrote:Not when the topic I was discussing - whether CCSVI would have treated numbness (potentially) in addition to fatigue was the response I had. Which was your post.

If I quoted his it would have looked out of place.


:)
As I said before the tough part is answering whether the " improvements" were a result of the natural process of the individuals MS, placebo, or the treatment itself. I think the fact that MS is different for everyone is one of the toughest challenges facing any new MS therpay.
It's funny how those "improvements" don't happen for years in some people or are symptoms they've ALWAYS had ... then angioplasty to fix CCSVI (at least parts of CCSVI) and within hours or days - wham ... there are those "improvements".

very strange ...
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Post by CaptBoo »

"Everyone takes the limits of his own vision for the limits of the world."
...Arthur Schopenhauer


From Wikipedia...
Arthur Schopenhauer (22 February 1788 – 21 September 1860) was a German philosopher known for his pessimism and philosophical clarity. At age 25, he published his doctoral dissertation, On the Fourfold Root of the Principle of Sufficient Reason, which examined the fundamental question of whether reason alone can unlock answers about the world.
<div>There be no dragons   ...Reese Palley</div>
malden

Post by malden »

Arthur Schopenhauer:

"Human life must be some kind of mistake. The truth of this will be sufficiently obvious if we only remember that man is a compound of needs and necessities hard to satisfy; and that even when they are satisfied, all he obtains is a state of painlessness, where nothing remains to him but abandonment to boredom."
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