This Is MS Multiple Sclerosis Community: Knowledge & Support

Just picked this up from another web-site where the Journal will be reporting a couple of "studies" that don't help !!!!!! Seems Dr Z has responded and perhaps someone from TiMS with way more knowledge than I (Dr S would be good !!!!) might want to write the reporter - his e-mail is provided.

Check out:

http://online.wsj.com/article/SB1000142 ... 10380.html

This is actually in the wrong forum and will probably get more input if a moderator moves it to CCSVI..

I'm not familiar with the Swedish study but the German one is the Charité Hospital Berlin study from earlier this year and has been discussed here. It's been said that their methodology was flawed. I'll look for a link where the topic was discussed later..



OK, found it. It's here!

Topic has been moved.


NHE

Not the Wall Street Journal again!!!!!

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"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

Same cast of characters, including Hauser.

This is why focusing on Doppler is misguided. It will bean important tool for follow up, but a venogram is the best way to get accurate stats. I really hope the Saskatchewan treatment trial proposal gains traction the week, and that Buffalo moves ahead.

It probably wont achieve anything but this is a copy of what I sent Mr. Burton.

Studies Cast Doubt on New MS theory

This is another study which does not attempt to replicate Zamboni’s findings and so fails to shed any light on the controversy. Like previous inimical research It seems to aim at demonstrating that there is overall sufficient capacity in the veins draining the head and that there is no significantly reduced flow thru the jugular veins.

Zamboni’s hypothesis is more specific than this. It is based on the existence of reflux. It is identifying this reflux that is a major aim of the Doppler scanning. Total outflow from the brain may not be obviously affected while there is still significant reflux. Also CCSVI symptoms can take years to be apparent so it is quite conceivable that this reflux does not have to be very great to do significant damage over a number of decades.

Numerous researchers have failed to measure this phenomenon when fist attempting the Doppler scans. When they have subsequently been trained by Zamboni they do consistently find it.

If sceptical researchers whose intention is to disprove Zamboni do not undergo the same training and then replicate Zambonis methodology then they are not addressing the same phenomenon. If they don’t do that then their scepticism is getting in the way of their science. Until they do they will fail to prove anything useful about Zamboni’s hypothesis.

In any case this is all a red-herring. What is agitating the skeptics is not the theory at all. The ‘theory’ was published in 2006. If they really thought that it was ‘surprising and intriguing’ then we would have had this research four years ago. It was the publication by Zamboni in 2009 that he had successfully treated the condition that set off this controversy. What is actually bothering the neurologists is the fact that the treatment seems to work.

MS sufferers are naturally very impressed by the stories they have read of dramatic improvements following the ‘liberation’ procedure. They want this treatment to be tested and if proven made available as soon as possible. I would call that a reasonable point of view. They do not particularly care about the theory. Also from their point of view the situation is urgent. Some are progressing very rapidly in their disability, others are simply waiting to reach the same stage themselves. They naturally want to know whether this can help them.

So what is the response of the MS Society and it’s advisers to this ? They set up trials seemingly aimed at showing that the phenomenon of CCSVI does not exist. No funding at all was provided for testing the treatment. The superficial logic for this is that you cannot treat something that does not exist. This is about as good an excuse as I used to get from my students for not doing their homework.

Not surprisingly this ‘head in the sand’ approach has not satisfied MS patients who have been forced to go overseas and pay for treatment by more enlightened doctors. Because of that the total number of ‘unapproved’ treatments may by now have passed 2000. Large numbers of people are still reporting dramatic improvements of a type that would be very difficult to explain as placebo. But substantial numbers are reporting no improvement. Clearly there are very important questions to be resolved relating to treatment. Not least of which is a procedure to identify which patients are likely to benefit and which not. Yet all this is ignored by the MS Societies and the sceptics.

The attempt by the sceptics to destroy Zamboni’s hypothesis is both petulant and pointless. Suppose they succeeded in doing so it would not alter the fact that so many people have been treated with very positive results. In two years time when the reports are due to be published there are likely to be tens of thousands of people who have had the treatment. By then no-one will be interested in proving or disproving CCSVI. By then the treatment will have proved itself (or not.)

It is time that the sceptics came clean and admitted that the research which has been funded is merely an attempt at misdirection which is bound to fail. The real issue is treatment and always has been. MS patients know this and so do increasing numbers of ‘fringe’ doctors. As an excellent doctor who might be called the uncrowned king of the lunatic fringe recently observed ‘when you treat them it is obvious.’

In spite of the efforts of the established authorities I am confident that the balance of power in this game will continue to swing in favour of Zamboni’s supporters. The evidence that will count will come from those people willing to undergo the treatment not these studies. The real choice the sceptics have is either to stand outside throwing stones or come in and join the party. It is too late to stop this ball rolling. If they choose to stay outside they will simply become irrelevant.

well said! AMcG..
Did you e-mail this direct to that arrogant twit Burton? or will it show up in the comments section? I'm hoping both.

The more desperate they become more such studies and articles keep popping up.

No one can deny the fact now that liberation procedure +ve results. There are people who don't see benefits or see negative benefits. That might very well be due to not understood part of ccsvi which should get ironed in due course. There wasn't an idea that worked perfectly the first time. Everytime there is a hiccup, people who want it to fail will be the first one to point finger and discredit the idea itself. These people in general are themselves big failures who can't digest others success.

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

Dr Tariq Sinan also wrote a great letter:
http://ccsvi-ms.ning.com/profiles/blogs ... -posts-the

oh sorry, I wrote Dr. Sclafani and asked him about this and a similar article. I just wanted to hear what he might say in response, as I gear up to ask my doctor for a referral for cCSVI testing. I'm sure I'll meet resistance.

If my post is in the wrong place, please moderators, just delete. It seems obvious if the same testing methods as Dr. Zamboni et al have established aren't used in a study, it doesn't discredit his theory. Right?

I put up the Swedish study on this link:
http://www.box.net/shared/dka02dq2pv

available today from the Annals Of Neurology (Wiley), pm me your email in case link doesn't work.

here is a release from the Umeå University, Swedish only (try google translate)
http://tinyurl.com/2wh2d44

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So now the LA TImes has picked up the same psueo-scientific article. Isn't it amazing that when Dr. Zamboni et al published their work, there wasn't a word in U.S. media and now suddenly two studies in Germany & Sweden that didn't even use the same testing protocol as Dr. Zamboni and are claiming to disprove his work are suddenly making BIG MEDIA newspapers?

Big Pharma saying KaChing $$ with every article that's printed.

Come on. And people laugh at us when we say Big Pharma is trying to sweep CCSVI under the rug.

http://www.latimes.com/news/science/la-sci-ms-treatment-20100803,0,1444153.story

"Ditto!" Selkie unfortunately i think might be on the right track. And
isn't it interesting tha Kuwait approved CCSVI and is now treating their
people for the disorder.

Joan Beal 'Cheerleader' has responded to the LA Times with an offer to assist anyone seeking the truth..

'copy & paste' is the ruin of informed journalism ...

Thanks Joan!!