CCSVI - False Hope?

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

CCSVI - False Hope?

Postby quarkrad » Wed Apr 07, 2010 1:01 am

I am new to MS (1 yr) and just starting the long journey (actually it is my wife who has MS). We are very excited with CCSVI and disappointed with the attitude by the majority of neuros in the UK. I think I can understand 'part' of their reluctance - i.e. is this yet another false hope? I have read on the web mis expectations with things like stem cells. And the fact that there is not 300 yrs of study/research/proof.

Was there as much hype/hope/expectations with stem cells?

What I'm struggling with is that yes, CCSVI might not be a permanent cure, but there is evidence of real people having treatment and there being a real improvement in their condition. Time will tell if these changes are short term or long term but one cannot ignore the results. When 'stem cells' was the 'next best thing' was there actual improvements in real people like there is wit CCSVI? To my knowledge no drug/dmd offers or claims to have such improvements in conditions as ccsvi is having - so how on earth can the medical establishment ignore something that improves quality of life even if it is short term?
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Postby happy_canuck » Wed Apr 07, 2010 1:24 am

Quarkrad,

Depending on who you speak with, you'll get a different opinion about why this hasn't been shouted from the rooftops. My pet theory is this has to do with capacity -- the medical systems of the world cannot absorb such a huge surge of patients needing testing and treatment without iron clad proof. If politicans go to taxpayers and say "pay for this with increased taxes" and it doesn't work -- they won't be very popular. In private systems, insurance companies won't jump at the chance to pay for something if they can avoid or delay it.

To treat all of us will need enormous new infrastructure investments, personnel, and ongoing training and research. Who will pay for this based on a new theory?

In the meantime, people are paying for this out of pocket with a few scattered centres. Why would any system be in a hurry to dissuade patients from doing this on their own and pick up the tab?

I believe we will make a crack in the system and get testing and treatment (I'm from Canada), but we might not like the way this might roll out. Who gets treated first? What about re-stenosis (do they go to the end of the line)? These are difficult, ethical decisions that speak to the heart of our social net. I wouldn't want to necessarily be the one having to make those decisions, but I know they are being discussed at the very highest levels as evidence mounts indicating CCSVI is the real thing and needs to be acted upon.

Welcome to TIMS!

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby sbr487 » Wed Apr 07, 2010 1:43 am

The real validation is at the hands of the patients. I think if CCSVI was not an answer to MS, it would have probably died down by now. What is important to note is the fact that lot of other "cures" have been promoted by pharmas/researchers (with good intentions, of course). On the other hand, CCSVI has been (is is still being) mainly promoted by patients ...
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Postby Johnson » Wed Apr 07, 2010 2:04 am

Well put, sbr487 & Sandra.
My name is not really Johnson. MSed up since 1993
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Postby quarkrad » Wed Apr 07, 2010 3:15 am

Thanks - I see/agree with your comments. Where is stem cells? It is an option/treatment for MS or was it something that never really happened in a practical sense.
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Postby kevin4apenny » Wed Apr 07, 2010 5:48 am

Hi folks :D

Happy_canuk I quite agree. what a rational person you are. It's a huge logistical issue. I did tell one of our MP's ( I am in Scotland - MS CAPITAL, apparently, about Zamboni and CCSVI but have heard NOTHING since so I will email them again.
I did hear though, on (Nurse) Elaine De Lack's Tokblog Radio broadcsast station that PROF. MICHAEL DAKE IS still doing the Procedure that was rumoured* to have been stopped. ? It got onto Liberation TREATMENT'S LETTERS PAGE. PHARMACUETICAL COMPANIES put out :evil: * word that he had run out of funding. Apparently Elaine called the Professor about it and he put her right. I think we'll see a lot of these cynical moves.
Those companies stand to lose Billions like GLAXO did after Heliobacter was discovered.
I am just off to post a very angry, but polite, letter to my GP insisting on a DIAGNOSIS of CCSVI whether or not they agee it causes MS - it is still dangerous and I will talke the NHS to court if they refuse to treat me or even to find out if I have blockages. There is more that way to skin as cat ( apologies to Feline-lovers). Just a thought, I am totally NOT one of those radical organisers, truly. but any views on sorting ourselves into a cohesive group to put some pressure on the medical world to at least allow MS sufferers to access diagnosis - surely that is our basic right anyway and the talking shop may only serve to philly-buster this point. The Doc listenned to my neck :? as if she would be able to hear which direction the blood was traverlling in 8O Who else gets treated like a NEUROTIC? Ou bizarre symptoms cry cerebral toxicity yeah? If the MS doesn't kll me the frustration will.
Ps I can't see how to subscribe to the Thisisms Newsletter can anyone help, O am so dim :cry: Sorry if I miss all my typo's
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Postby Asher » Wed Apr 07, 2010 6:31 am

happy_canuck wrote:Quarkrad,

Depending on who you speak with, you'll get a different opinion about why this hasn't been shouted from the rooftops. My pet theory is this has to do with capacity -- the medical systems of the world cannot absorb such a huge surge of patients needing testing and treatment without iron clad proof. If politicans go to taxpayers and say "pay for this with increased taxes" and it doesn't work -- they won't be very popular. In private systems, insurance companies won't jump at the chance to pay for something if they can avoid or delay it.

To treat all of us will need enormous new infrastructure investments, personnel, and ongoing training and research. Who will pay for this based on a new theory?

In the meantime, people are paying for this out of pocket with a few scattered centres. Why would any system be in a hurry to dissuade patients from doing this on their own and pick up the tab?

I believe we will make a crack in the system and get testing and treatment (I'm from Canada), but we might not like the way this might roll out. Who gets treated first? What about re-stenosis (do they go to the end of the line)? These are difficult, ethical decisions that speak to the heart of our social net. I wouldn't want to necessarily be the one having to make those decisions, but I know they are being discussed at the very highest levels as evidence mounts indicating CCSVI is the real thing and needs to be acted upon.

Welcome to TIMS!

Thank you Sandra, I for one subscribe to everything you have written. It’s all about the money and the system if struggling to cope with graying populations and insatiable demand for care.~Sandra
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Postby sbr487 » Wed Apr 07, 2010 6:40 am

Quarkad,
Here is the best answer for your question. Remember this did not happen for any of the other MS "cure"
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Postby sbr487 » Wed Apr 07, 2010 6:43 am

sbr487 wrote:Quarkad,
Here is the best answer for your question. Remember this did not happen for any of the other MS "cure"


http://www.thisisms.com/ftopict-11043.html
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