Providing CCSVI treatment now will set a dangerous precedent

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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TMrox
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Providing CCSVI treatment now will set a dangerous precedent

Post by TMrox » 8 years ago

The editor of the Canadian Medical Association Journal warns that allowing the wishes of special interest groups to drive public health care spending sets a dangerous precedent.

Access to treatment for multiple sclerosis must be based on science, not hope

Here the Editor's letter:
<shortened url>

and media coverage:
<shortened url>

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scotland
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Post by scotland » 8 years ago

:o

Some of we 20 years msers have lived with , and counted on hope for a long time, we depend on it, its an old friend. Its reliable.
Others count on science, which tends to keep its secrets to itself, over a much longer time, all the while providing a juicy income.

Ya take your pick.
Scotland

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cheerleader
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Post by cheerleader » 8 years ago

Thanks for posting the editorial, TMrox---Venous stenosis, reflux and congestion is a known entity. It is treated in other parts of the body. Why should it be different in the brain and spine? Why is venous stenosis considered "science" and treated when it affects the liver, kidneys or legs? Why is it considered "hope" when it affects the brain?

Perhaps the truly hopeful ones are not the patients, but rather the neurologists....maintaining hope that MS will not be reclassified as a vascular disorder.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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MarkW
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Canadians please reply

Post by MarkW » 8 years ago

I hope that a group of Canadians with MS will reply to this. I would discredit the editor by citing the many papers on ccsvi. Next explain correlation between MS and CCSVI. Then say if real blocks in major veins are found they must be treated immediately as proper care for the patient.
If you can get a treated person to talk to the media that is best. I am too busy with the UK system to join in but GOOD LUCK.
MarkW
Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

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Vivianne766
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Post by Vivianne766 » 8 years ago

Let them say whatever they want. People are being liberated everyday.
:lol:

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MrSuccess
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Post by MrSuccess » 8 years ago

ho hum . same old same old. :roll:

Please read the whole article. It ends with the disclaimer that this letter is the opinion of the writer and -does not -represent the viewpoint of the CMA.

I would suggest a research background on the author . :idea: :idea:

Take note of the articles research materials. We already know all of that information .

Just another opinion . No Big Deal .

A nice rebuttal to this is in order. :twisted:





They keep trying .... don't they ? :wink:





Mr. Success

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Post by Cece » 8 years ago

Editorials can do real harm, depending on the prestige of the journal, as we saw with Dr. Sclafani's irb accepting an opinion piece based on the strength of the journal.

One thing I notice is that he felt the need to mention not once but twice that people with MS are acting out of desperation.

It demeans us to say we are acting out of desperation. Most of us here understand what a venous occlusion is, we understand its effects on organs in other parts of the body (such as in Budd-Chiari), we understand the risks of angioplasty elsewhere in the body, and we understand what is known of the risks of jugular venoplasty. Most of us here have done the analysis of risk versus benefit. Most of us here would be willing to receive treatment in part of an open-label study if such studies were made widely available. To call us desperate is to demean our ability to understand this.

I also find it offensive that while we have done the legwork to understand CCSVI, we have peppered Dr. Sclafani with our questions, we have read Zamboni's papers, I do not think the author of this editorial has done any of this. Yet he has chosen to write an article that may slow the progress in Canada toward universal treatment of CCSVI.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

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Vivianne766
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Post by Vivianne766 » 8 years ago

You know what. I changed my mind and I am taking back what I just said. It is not OK. for these so-called editors/ doctors to say whatever they want.
I will be calling the CMAJ and I will give them a piece of my mind.

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Post by AlmostClever » 8 years ago

cheerleader wrote:Thanks for posting the editorial, TMrox---Venous stenosis, reflux and congestion is a known entity. It is treated in other parts of the body. Why should it be different in the brain and spine? Why is venous stenosis considered "science" and treated when it affects the liver, kidneys or legs? Why is it considered "hope" when it affects the brain?


cheer
Absolutely 100% dead on! Who said we were attempting to cure MS besides Dr. Stanbrook? We're addressing CCSVI!

Dr. Stanbrook misses the point! Try again, Doc...
If you can't explain it simply, you don't understand it well enough. - Al Einstein

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MrSuccess
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Post by MrSuccess » 8 years ago

Cece - hello ... have you read the disclaimer that followed the article ?

That is very important to understand . The CMA clearly states ... that the articles content does not represent the opinion of the CMA .

Therefore ..... the article only represents the opinion of ONE person ...... NOT the Canadian Medical Association as a group.

We have seen this before. Remember the Lancet joke ???



Don't give this article and it's author any weight ..... I have already shot this goose out of the sky ......... :wink:


Next ? Colin Rose ....... Bob ?? :wink:


Sleep tight Cece ..... the good guy's are gaining ground :lol: :lol:




Mr. Success

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PCakes
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Post by PCakes » 8 years ago

..an eloquent writer, void of facts and reality, perched on a teeter totter.. love how the Helicobacter pylor analogy is used to highlight the challenges to opening the medical mind..sigh
p.s. any word on how Barb Farrell is doing? I pray well. This would be the perfect rebuttal..

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TMrox
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Post by TMrox » 8 years ago

While we get this kind of editorial opinions based in pure hot air, other doctors are more proactive and hands on.

See news about North America's first clinical trial on the "liberation treatment".


http://www.thisisms.com/ftopict-12487.html

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