Concerns raised about controversial MS treatment

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Concerns raised about controversial MS treatment

Postby MSUK » Mon Mar 07, 2011 1:05 am

Image

Serious concerns have been raised about a controversial vein-widening treatment being offered to people with multiple sclerosis.

An investigation by BBC Inside Out discovered that one doctor carrying out the procedure in Egypt is not licensed to practice medicine in that country.

The BBC understands that in the UK, an NHS GP has been reported to the doctors' watchdog, the General Medical Council, for organising the treatment through his private company at a cost of nearly £8,000.

The operation has been dubbed the 'Liberation Procedure' by those who believe it helps relieve the symptoms of MS, an incurable condition.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2954
MS-UK - http://www.ms-uk.org/
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Postby Daisy3 » Mon Mar 07, 2011 2:17 am

oh no,

Just read the article. Really does not sound good.
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Re: Concerns raised about controversial MS treatment

Postby muse » Mon Mar 07, 2011 3:21 am

squiffy2 wrote:Image
Serious concerns have been raised about a controversial vein-widening treatment being offered to people with multiple sclerosis....................


...Yeah right squiffy2 & for that reason BIOGEN has announced today that they are "branching out" from MS drugs like Tysabri, Avonex & similar poison which is killing pwMS easily, just to look for other rewarding diseases. :twisted: http://www.reuters.com/article/2011/03/ ... B320110304
"MS" doesn't exist! - CCSVI dx Nov.2009, 1. angio LVJ & RVJ June 2010, 2. angio RVJ April 2011, January 2012 2. restenosis, reversed after ~1 year intake of high dosage Magnesium only. ThisIsCCSVIinMS: http://tinyurl.com/nwy5x58
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Postby MSUK » Mon Mar 07, 2011 3:25 am

Hi Muse, I just report the news............
MS-UK - http://www.ms-uk.org/
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Postby muse » Mon Mar 07, 2011 3:47 am

squiffy2 wrote:Hi Muse, I just report the news............


…& I just react to the news.
Otherwise I hope you & your editorial department will find the time to read the subsidiary Reuters–stuff
http://www.reuters.com/article/2011/03/ ... B320110304
as well. Arne
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Telegraph verses BBC South West

Postby MarkW » Mon Mar 07, 2011 4:04 am

Sounds like rational people need to start talking to the BBC at national level. You may notice that I do not use the lib word or the cure word in my article. That was a definite choice.

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 muse » Mon Mar 07, 2011 4:38 am

Thank you Mark for being such a brilliant ambassador for pwCCSVI!
Best
Arne

http://www.telegraph.co.uk/health/83598 ... minds.html
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Postby Lyon » Mon Mar 07, 2011 6:52 am

..
Last edited by Lyon on Thu Jun 23, 2011 5:24 pm, edited 1 time in total.
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Postby Motiak » Mon Mar 07, 2011 7:01 am

Yeah, Biogen has nothing to do with the posted article. That is odd that Dr. Sinan would tell a patient that. I don't think it minimizes the effectiveness of what he does but it also strikes me as something he should go ahead and remedy.
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Postby Cece » Mon Mar 07, 2011 7:23 am

from the article wrote:The operation has been dubbed the 'Liberation Procedure' by those who believe it helps relieve the symptoms of MS, an incurable condition.

It was dubbed "the Liberation Procedure" by a member of Zamboni's team who used the word liberation to describe the blood flow being liberated or opened when the stenosis is ballooned.

I like to keep repeating this, since it's true and all, in hopes that it will stick.
BBC Inside Out's Sam Smith outside the Essential Health Clinic Nonetheless, vein widening - without stents - is now being offered in the UK by a Glasgow-based company called the Essential Health Clinic.

BBC Inside Out presenter Sam Smith went undercover to be scanned by Essential Health - the first stage in the treatment process which in total costs just under £8,000.

She was diagnosed with CCSVI.

London-based vascular surgeon Ian Franklin said of Sam's diagnosis: "This reinforces the concern a lot of people have that some of these anomalies might be present in the normal population and raises the question that it might not be specifically linked with MS."

That is worth discussing, why would a presumably healthy person be diagnosed with CCSVI? Is the ultrasound dopppler accurate? What would be found on her catheter venogram, would it agree with the doppler? What about the idea of permissive lesions, which exist benignly in some but when coupled with a secondary factor can cause a disease process in others?
from muse's article wrote:The company's goal is to reduce its dependence on its multiple sclerosis products and build a new franchise around its experimental drugs to treat hemophilia, an inherited disorder in which the blood does not clot properly.

Yes, good to reduce the dependence on its MS products, just in case all of us patients also are able to reduce our dependence on them. :) :)
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article

Postby zinamaria » Mon Mar 07, 2011 9:07 am

"The operation has been dubbed the 'Liberation Procedure' by those who believe it helps relieve the symptoms of MS, an incurable condition."

Yes Cece, you are correct. It was in fact Dr. Fabrizio Salvi, Zamboni's right hand man, the one who sent him the MS patients from the Bellaria Clinic in Bologna to be treated for the trial, one of the only neurologists, it seems, to be thinking far beyond convention, the one who was initially skeptical until he started to see improvements in his patients. It was Salvi who used the word 'liberated', and Zamboni loved it and they decided to name the procedure (nobody 'dubbed' anything) The Liberation Procedure for exactly the same reasons you stated, because of the blood being liberated to flow freely after angioplasty.

It is exhausting to read journalism precisely because of inaccuracies and subliminal suggestions.

Who can say for sure MS is an 'incurable condition' just because we have not found a cure? What about stating that 'currently there is no cure', but that researchers, not pharmaceutical companies, are trying their best over there in Italy to FIND, perhaps, maybe, hopefully! a cure.
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libertationerality

Postby 1eye » Mon Mar 07, 2011 10:05 am

I think I'm avoiding the L word mostly (except for song lyrics/parodies). I think in spite of its misuse by the press, the word is sometimes appropriate, in more ways than just regarding blood flow. Maybe not in general, but in a lot of particular cases. Nevertheless, I think our old friend General Public needs to avoid medical stories in the press. Newspapers thrive on controversy and scandal. Just what sick people need. No doctors or patients or scientists or insurance companies or even politicians benefit from this kind of propaganda. Only publishers.

If it sells newspapers, there will often be a story made up where none really exists, in spite of what it may do to innocent bystanders. Of course, if it's right there in black and white, it is taken by the average person to be true. So a simple word becomes both a rallying cry and a sign of cult activity. It's just a word, folks. Get real and start talking about facts, not just words.
"Try - Just A Little Bit Harder" - Janis Joplin
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liberation

Postby zinamaria » Mon Mar 07, 2011 10:22 am

Leye said: "It's just a word, folks. Get real and start talking about facts, not just words."

Not sure who you're referring to, the 'folks' in journalism, or the folks on this thread, but I would like to say that I did state a fact, precisely about the 'word' itself.
There are no facts without the use of 'words' because language is what we have to express those 'facts', and how we use language, or 'words', like the Liberation, is very important here because the Fact is that this particular word can and does mean a variety of things to a variety of people. So facts? They can easily get lost in transliteration.
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Postby Hopeful10 » Mon Mar 07, 2011 10:42 am

Wow, what a terrible hatchet job by the reporter. She references the U.S. study (at BNAC) that found over half of MSers have CCSVI, but neglects to state two additional important pieces of information from the same BNAC study: about a quarter of non-MSers were found to have CCSVI , and yet the association between CCSVI and MS was still found to be significant.

So when the reporter lets readers know that she was diagnosed with CCSVI, without providing appropriate context, she intentionally tries to create the impression that CCSVI is BS. I don't have the time to delve into the other problems with the article, but this lack of context is a problem throughout the article.

Cece, thanks for the excerpt and the discussion of permissive lesions. For those who didn't see Cece's thread on permissive lesions, Dr. Cummings noted that he expected that a lot of non-MSers would have CCSVI, since there's a similar phenomenon with vericose veins -- a lot of people have significant veriscocity, but only a subset get vericose veins.

Cece wrote:
BBC Inside Out's Sam Smith outside the Essential Health Clinic Nonetheless, vein widening - without stents - is now being offered in the UK by a Glasgow-based company called the Essential Health Clinic.

BBC Inside Out presenter Sam Smith went undercover to be scanned by Essential Health - the first stage in the treatment process which in total costs just under £8,000.

She was diagnosed with CCSVI.

London-based vascular surgeon Ian Franklin said of Sam's diagnosis: "This reinforces the concern a lot of people have that some of these anomalies might be present in the normal population and raises the question that it might not be specifically linked with MS."

That is worth discussing, why would a presumably healthy person be diagnosed with CCSVI? Is the ultrasound dopppler accurate? What would be found on her catheter venogram, would it agree with the doppler? What about the idea of permissive lesions, which exist benignly in some but when coupled with a secondary factor can cause a disease process in others?
Last edited by Hopeful10 on Mon Mar 07, 2011 11:24 am, edited 1 time in total.
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Postby ikulo » Mon Mar 07, 2011 10:50 am

Squiffy - thanks for posting. It seems the messenger has been shot, yet again.

Regarding the actual story - I'm wondering whether the EH Clinic in Glasgow requires a confirmed MS diagnosis to be treated? Or are they scanning anyone? Otherwise how did this undercover reporter get scanned?
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