Study shoots hole in 'liberation' theory

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

Off Label Drug Use

Postby MarkW » Thu Apr 14, 2011 9:14 am

MarkW wrote:
If anyone wants to see open label data from de-stenosis go to:
http://ameds.co/about-us/recent-informa ... centrum,37

Griff wrote:
Would you take a new drug whose efficacy is based on people's survey?
Why can not they check their Polish patients regularly? Poland is not a huge country.

Balloon venoplasty is not a 'new drug' but using an existing procedure in a novel way. Drugs are used this way all the time. Its called off label prescribing. Doctors use drugs 'off label' without any testing or people's survey.

For us Europeans Poland is geographically large. Why should people with MS pay for extra check ups??

MarkW

PS Liberation theory does not exist , so how can it have holes shot in it ?
Last edited by MarkW on Thu Apr 14, 2011 9:19 am, edited 1 time in total.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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 1eye » Thu Apr 14, 2011 9:15 am

eric593 wrote:They aren't collecting data because they don't have to. They are in business providing CCSVI treatment because there is a demand for it. They aren't in the business of research, they are in the business of opening veins for profit.

In spite of that, we DO have publications out of many of those performing CCSVI treatments. They may not have collected the information future patients might want to read, but many ARE sharing certain aspects of what they're finding. This was obvious at the SIR conference.

But they aren't doing this as researchers. They are treating us as practitioners because we ask them to and pay a lot of money, not to be research subjects, but to be patients of angioplasty.

It seems unrealistic to expect them to do more than treat the demand for angioplasty.


I beg (there I go, begging again) to differ slightly. They have new machines; they collect data because they can, because they like to, because they're curious, and to amortize their machines for the bean-counters. It's all there. It just costs money to publish it. I ain't got it. You got it? I think there's more data there than you can shake a fist at.
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Liberate your words!

Postby 1eye » Thu Apr 14, 2011 9:58 am

Liberation theory does not exist , so how can it have holes shot in it ?


heeeeyyyy....


I thought Liberation was supposed to be a bad word, with unfortunate connotations of freedom from enslavement, made up by bad people who want to give it propaganda value, and at the very least it was inflaming the debate. How come all of a sudden it's ok for it to be used to describe CCSVI 'theory'? Is it OK now? Shall we start using it again?
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Postby Mathd » Thu Apr 14, 2011 10:00 am

"While this may suggest an association between the MS and CCSVI, association does not imply causality," Zivadinov


it looks non-conclusive and like they need to continue their research...
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Postby scorpion » Thu Apr 14, 2011 10:09 am

Mathd wrote:
"While this may suggest an association between the MS and CCSVI, association does not imply causality," Zivadinov


it looks non-conclusive and like they need to continue their research...


Zamboni's original results shoud be tossed out the wndow and for researchers interested in finding a possible connection between CCSVI and MS, yes, their reseacrh should continue. It loks to me that MS may cause some damage to the veinuous system and IF that is the case the question becomes do these changes result in additional stymptoms. In my opinion Zamboni needs to come forward and admit his original study was flawed.
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Postby jimmylegs » Thu Apr 14, 2011 10:15 am

well, they do say ms is an inflammatory condition...
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby eric593 » Thu Apr 14, 2011 10:16 am

What surprises me is Dr. Sclafani's statement that he had NEVER encountered vein issues like this before, in his entire career. If this is as prevalent in other disorders and healthy people as reported by BNAC, I am very surprised that an IR who spent his entire career in veins had NEVER encountered this before.
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Postby scorpion » Thu Apr 14, 2011 10:27 am

jimmylegs wrote:well, they do say ms is an inflammatory condition...


You are right Jimmylegs. You just never know when things are going to flare up!
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Teasing naysayers

Postby MarkW » Thu Apr 14, 2011 10:36 am

MarkW wrote:
Liberation theory does not exist , so how can it have holes shot in it ? Answers naysayers please.............

1eye wrote:
I thought Liberation was supposed to be a bad word, with unfortunate connotations of freedom from enslavement, made up by bad people who want to give it propaganda value, and at the very least it was inflaming the debate. How come all of a sudden it's ok for it to be used to describe CCSVI 'theory'? Is it OK now? Shall we start using it again?

I used the phrase 'liberation theory' to tease the naysayers as neuros say it can be shot through. Prof Zamboni has moved forward to calling his 'baby' CCSVI syndrome. Not a disease nor the cause of MS but a treatable syndrome. Sorry for using the 'L' word even to tease naysayers.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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 jimmylegs » Thu Apr 14, 2011 10:41 am

Q E D
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
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Postby CaptBoo » Thu Apr 14, 2011 1:58 pm

I had never heard of "QED". Maybe I'm not alone. I post this to help educate the rest of us. From UrbanDictionary.com:

1. QED 1051 up, 242 down
Originally Latin meaning "quod erat demonstrandum" or "which was to be shown or proven", now used mainly by physics students to insult someone when something is proven wrong or false, typically with the words M***** F***** added for effect.
Ha! Your wrong.. QED mf!
by ChickensBitch Oct 27, 2003 share this

2. QED 813 up, 61 down
An abbreviation of the Latin phrase "quod erat demonstrandum". It literally translates as "which was to be demonstrated", and is a formal way of ending a mathematical, logical or physical proof. It's purpose is to alert the reader that the immediately previous statement, which naturally was arrived at by an unbroken chain of logic, was the original statement that we were trying to prove.
"I refuse to prove that I exist," says God, "for proof denies faith, and without faith I am nothing."
"But," say Man, "the Babel fish is a dead giveaway, isn't it? It could not have evolved by chance. It proves you exist, and so therefore, by your own arguments, you don't. QED."
"Oh dear," says God, "I hadn't thought of that" and promply vanishes in a puff of logic." -- Douglas Adams, from "A Hitchiker's Guide to the Galaxy"


Proof that x + 3 = 0 if x = -3

x + 3 = (-3) + 3
= 0
QED
<div>There be no dragons   ...Reese Palley</div>
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Postby jimmylegs » Thu Apr 14, 2011 2:25 pm

good old urban dictionary.

here's wikipedia's version
QED is an initialism of the Latin phrase quod erat demonstrandum, which means "what was to be demonstrated". The phrase is traditionally placed in its abbreviated form at the end of a mathematical proof or philosophical argument when what was specified in the enunciation — and in the setting-out — has been exactly restated as the conclusion of the demonstration.[1] The abbreviation thus signals the completion of the proof.

ps. i stand by my use of QED :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Study shoots hole in 'liberation' theory

Postby orion98665 » Thu Apr 14, 2011 4:34 pm

Lyon wrote:Study shoots hole in 'liberation' theory for multiple sclerosis

Read more: <shortened url>


"Hmm!!" i was going to make a comment about how the author of this article
as of last night didn't have a place for readers to chime in and post
comments either for or against CCSVI . However, as of now i see this has changed!!!

Noticed how all of the comments are for CCSVI and NOT bashing it!!

Regards,

Bob
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Postby Liberation » Fri Apr 15, 2011 1:28 am

Cece wrote:What is the incentive for the eastern European IR to pull this all together?


In many European countries, health care is financed by government and hospitals are owned by state or municipilaties. Doctors get a fix salary just like other people get in other profession. Why would doctors do this? Why do they do other operations? It is their job here.

The idea is to take profit already earned and use it to pay for follow-up dopplers and neurologist exams at no charge for local patients?


The idea is not that we use already earned money for follow-ups, but that the price you pay (USD 10,000) should cover both the CCSVI operation and the follow-ups. You can even break it into pieces if you like it that way better.

I must say that my fist operation was done at a state owned hospital in Serbia and I paid less than USD 3,000 and that also covers my follow-up visit. So it can be done. :)

In our health care system, follow-ups are part of the treatment and it is a very important element of it.

This is out of the belief that the profit is misbegotten, that they should not be charging the going rate when that rate goes so much further in their country?

It is still not a RCT, it does not prove much, and it's a lot of work with no benefit to the IR, only to science. This is not a charity and it is a business model, much as we would have it be otherwise.


I can not imagine any healtcare treatment without follow-ups. When I had surgery I had to go back for control.

IRs here say that any operation could have complications, so this is why you have to show up for control. This is their best interest also, because any complications might bring them into court. As this is not an ordinary operation, they think it is even more important that we should have control. Gaining data from this would be a fringe benefit as every doctor visit is documented here.

Personally, I am upset about the Polish, Bulgarian, etc. practices and their very poor administration, because I know it turned off several IRs in this region who wanted to do what I outlined here with the support of neurologists at state owned hospitals.

As I said previously, I was sent to MRV by a neurologist and a team was set up to examine lots of MS patients and do the CCSVI operations. The project was stopped after the MRVs when IRs went to Euromedic to examine their results and they got dissappointed.

As I said before the US is a different ball game, because it is a huge country with great distances and the health care is financed differently. I still beleive that our best chance to get proper documentations of patients with follow-ups is Europe, because of the shorter distances in a country.

I hope once this dream comes true for our best interest. :)
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Postby Liberation » Fri Apr 15, 2011 1:42 am

eric593 wrote:In spite of that, we DO have publications out of many of those performing CCSVI treatments. They may not have collected the information future patients might want to read, but many ARE sharing certain aspects of what they're finding. This was obvious at the SIR conference.
quote]

What kind of publications? The data they collected from patients through a questionery. :)

But they aren't doing this as researchers. They are treating us as practitioners because we ask them to and pay a lot of money, not to be research subjects, but to be patients of angioplasty.

It seems unrealistic to expect them to do more than treat the demand for angioplasty.


I think documenting patients is not a research. That should be a minimum. Requesting follow-up visits is part of the treatment in a normal health care system. At least in my country, wehen I had an operation I had to go for check-ups.
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