It's a procedure - not a cure

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

It's a procedure - not a cure

Postby itsjustme » Mon Jan 03, 2011 7:22 am

Hey,

How come I keep reading where people are talking about the "Liberation Treatment" as being a "cure" for MS?
Are these people not thinking before they write? If this were so, then wouldn't it be called the "Liberation Cure"?

Maybe it's just that some people don't invest much thought into what they are actually saying.
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Postby erinc14 » Mon Jan 03, 2011 7:47 am

it's mostly the media doing it . :x like when they use the word "controversial ".
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Postby MarkW » Mon Jan 03, 2011 9:23 am

I agree with you, itsjustme.
Some people are actually slowing down progress on CCSVI by the words they continue to use.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Jugular » Mon Jan 03, 2011 9:30 am

I for one, am not afraid to use the "c" word, because it's the right word to use in a propaganda war where detractors do not shy away from using BS words like "hoax" to describe it.

Throwing out the word CURE keeps the interest up which fuels the scientific investigations which are needed to get this properly looked at and hopefully generally available as a treatment option.

I've struggled with MS for over 15 years and nothing I have ever tried caused a disability reversal the way liberation treatment has. So, if you want to split hairs, it may not be a complete cure, but it is curative or at least a partial cure.
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Postby Cece » Mon Jan 03, 2011 9:52 am

I'd say that 'cure' and 'hoax' can both be inflammatory choices.

Of course, the one I settled on ("break-through") isn't that much better. Perhaps "potential break-through" would strike the right balance. Ah well!
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Postby Jugular » Mon Jan 03, 2011 10:01 am

Cece wrote:I'd say that 'cure' and 'hoax' can both be inflammatory choices.

Of course, the one I settled on ("break-through") isn't that much better. Perhaps "potential break-through" would strike the right balance. Ah well!
I agree of course, except, most of the procedure's vocalized public detractors do not seem to be too bothered with striking a balance. But I guess we should lead by example. Can we upgrade "potential break-through" to "promising treatment" though? :-)
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Postby 1eye » Mon Jan 03, 2011 12:27 pm

That about does it for me: I am retiring the word "Liberation" in favour of the (capitalized) Procedure. If ever there is any ambiguity, I will capitalize "The", also. Which Procedure is it? The Procedure.

I hope someday everyone will know exactly what I am talking about.
"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 DrCumming » Mon Jan 03, 2011 12:45 pm

I would like to see the word Liberation retired. The media created it. Its misleading.
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Postby CureIous » Mon Jan 03, 2011 1:03 pm

mjc701 wrote:I would like to see the word Liberation retired. The media created it. Its misleading.


I don't even know if we know who coined the term, but I believe Zamboni himself was the origin, although it has a limited usage to just angioplasty, stents aren't invited to the party, however, it all gets lumped into the same basket regardless. That genie done left the bottle long ago and I doubt will ever find residence there again..
Toss in the media and their love of putting out whatever is the most convenient with less research than our average TIMS member, and you get what you get. Bloggers and quasi net-style media that aren't answerable to anything but their own conscience make it even more interesting...

Frankly, it's the media involvement in this that has done more harm than good. Every entity has something to gain or lose, and names and labels become of paramount importance in influencing public opinion.

For every utterance of Liberation procedure, we have at least 2 bee sting corollaries drawn.

There are empires being built on the backs of sickly MS patients all across the globe, there's money to be made, and notoriety to be attained, some smell opportunity from a mile away.
Unfortunately, one must always look into motive whenever CCSVI is brought to the fore in a widescale fashion, by any entity or organization. Regardless of the shiny wrapper...

Not all that glitters is gold.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby DrCumming » Mon Jan 03, 2011 1:13 pm

I am fairly certain that Zamboni did not coin the term - but of course I could be wrong.

The media has played a mixed role. It was media coverage that helped convince me that I should consider treating patients. It has helped focus attention on the plight of MS patients and their search for better treatment options. This has been good. But certainly, the media has also brought some negative attention as well.

And yes, where there is money to be made, you will find all sorts of marginal to bad behavior. Find a doc close to home, who is part of the community, who has a long term interest in his reputation and patients.
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Postby CD » Mon Jan 03, 2011 1:34 pm

On Wiki:
The term "chronic cerebrospinal venous insufficiency" was coined in 2008 by Paolo Zamboni, who described it in patients with multiple sclerosis.

http://en.wikipedia.org/wiki/Chronic_ce ... ufficiency


.
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Postby Cece » Mon Jan 03, 2011 1:37 pm

My understanding has been that the term "liberation" was a mistranslation of what Dr. Zamboni had said about liberating or freeing the blood flow. Translating that into English added all the connotations of liberation and off the media ran with it.
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Postby DrCumming » Tue Jan 04, 2011 4:44 pm

Cece wrote:My understanding has been that the term "liberation" was a mistranslation of what Dr. Zamboni had said about liberating or freeing the blood flow. Translating that into English added all the connotations of liberation and off the media ran with it.


That would make sense. Unlikely that the media could have come up the term on their own :D
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Postby Cece » Tue Jan 04, 2011 5:11 pm

mjc701 wrote:That would make sense. Unlikely that the media could have come up the term on their own :D

But now that they've got it, I don't think they'll ever let go. I'd like to see it retired too. I would also like to see any media attention (ok, positive or neutral) in the US! 50% of people in Canada know of CCSVI; that cannot be said here.
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Postby CD » Tue Jan 04, 2011 5:33 pm

In Canada it is on TV and in the newspapers all the time. Petitions signed and flash mobs.

Here, where do we see or hear of CCSVI ?- only on the Internet or the negative/ or wait articles from the NMSS and Neurology Now magazines.

Last time I saw my Neuro, three months ago, I said I will get this, as I held up her Neurology Now magazine in her office. I said I will get this underground if I have to. She just replied, "Too early." I am to see her the end of this month. Hmm.. to tell or not to tell, that is the question?

I wonder if she will dismiss me as a patient? Can she do that?
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