New MS treatment needs study

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

New MS treatment needs study

Postby scorpion » Tue Dec 14, 2010 6:34 pm

This is a pretty neutral article about CCSVI.


http://www.montrealgazette.com/health/t ... story.html
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Postby concerned » Tue Dec 14, 2010 6:53 pm

I was going to post that yesterday, but got caught up talking on the phone.
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Postby soapdiva884 » Tue Dec 14, 2010 6:56 pm

Very neutral, thanks for posting this scorpion.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Direct-MS » Wed Dec 15, 2010 1:53 pm

From the perspective of having read over 200 papers on CCSVI and closely related issues and having visited three CCSVI treatment/research centres, I found this article misinformed and basically negative.
Quoting Brad Stewart (who have never published a single scientific paper on MS) on CCSVI is like quoting a wino off the street except the wino may be more objective and better informed.
I am awaiting an intelligent, well informed newspaper article on CCSVI which captures both sides of the argument in a "neutral" manner.
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Postby bruce123 » Wed Dec 15, 2010 2:44 pm

Here is the main problem as I see it.

The article states,
"Before even considering a therapeutic trial, Bhan says, "two key questions must be answered: whether CCSVI or abnormal veins are more common in MS patients than controls (healthy subjects or patients with other neurological diseases) and how CCSVI can be tested most effectively."

These two key questions are important but they are not what we should be investigating first, which is "Does improving venous drainage improve the lives of MS patients and is it safe."

If shaving people's heads bald provided relief to people suffering with MS then I don't think studying the difference between the hair of MS patients and the the rest of the population would be the place to start looking for answers.

The current CCSVI studies are waisting valuable time and resources and due to the limitations of current imaging techniques, are likely to be inconclusive and result in more time wasted.

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Postby Blaze » Wed Dec 15, 2010 2:54 pm

I don't consider comparing CCSVI to Santa Claus and the Easter Bunny (which Dr. Stewart did) "neutral."

I certainly hope Dr. Bahn and Dr. Stewart are supporting Dr. Sandy MacDonald in his efforts to undertake a randomized, double blind controlled study. For months, Dr. MacDonald has been trying to get approval and funding for a study involving hundreds of patients and a team of interventional radiologists, vascular surgeons and neurologists.

This reminds me of Dr. Schelling's experiences over 30 years ago. First, the medical establishment claims there is not enough research. Then, they refuse to fund comprehensive research. That way, they can continue with the same old refrain of "no research."

I wonder if Dr. Bahn and Dr. Stewart are aware of the editorial of Scottish neurosciences professor Peter O Behan (http://www.thisisms.com/ftopict-14962.html). In this, Professor Behan calls outcomes of autoimmune research and treatment in MS "truly catastrophic."

Let Dr. MacDonald get on with his research! Canada is lagging behind other countries on this issue. That's a travesty in a country which has always prided itself on universal health care and leadership.
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Postby jimmylegs » Wed Dec 15, 2010 4:01 pm

well as i see it, if an article expresses a variety of perspectives it can be called neutral overall, so i am not sure why there is a problem with one perspective being negative.

i think the authors having selected the word hype, as opposed to say, optimism, enthusiasm, or hope, is as close as the overall discourse in this article comes to being negative.

i suspect that the point of positioning Dr. Stewarts opinion next to Ms. Severins thoughts are the authors way of highlighting the extremes of opinion involved.

i can see how that little trick might evoke an outraged response, but i do not imagine that anyone here disagrees with the main title: New MS treatment needs study.

as for the subtitle: 'Liberation therapy' shouldn't be embraced without further research, says specialist

obviously the response will be different for different people. of course some would say i cant wait for research. and others would say yes, i agree and will wait for further research. both valid.

PS sorry for my lack of apostrophes... keyboard issues...
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Postby Cece » Wed Dec 15, 2010 5:56 pm

Neurologist and multiple sclerosis specialist Dr. Brad Stewart, an assistant clinical professor at the University of Alberta, says, "there is no evidence linking problems with veins in the neck to MS.

"The notion that MS is caused by vascular problems is fundamentally wrong. I don't believe in Santa Claus, I don't believe in the Easter Bunny and I don't believe in this. I will accept hard data and good studies, but there aren't any."

Bhan says studies conducted by other researchers have not corroborated Zamboni's findings. "For example," he says, "Dr. Robert Zivadinov at the University of Buffalo, usingDr. Zamboni's methodology, found a smaller percentage of MS patients with CCSVI than did the Italian researcher (56 per cent versus 100 per cent). Similarly, studies in Germany and Sweden have failed to demonstrate CCSVI in MS. "

Bhan adds there are major risks in angioplasty on the veins in the neck. "I think that the most confusion for the public comes from the fact that angioplasty is commonly done for heart and stroke patients. But there are structural differences between arteries and veins, with arteries being thick-walled and, as such, can withstand balloon compression from inside, whereas veins are thin-walled and can rupture and lead to many complications."

The Santa Claus quote is up there with calling us cult members.

We've discussed the risk of rupture, there have been reports of "small extravasations" and one rumor of someone who had to have a stent put in after the vein tore. Tearing would appear to be very minor on the scale of risks.

Studies in Germany failed to find CCVSI in MS but 10 out of 14 studies presented at ECTRIMS did.

But is this considered whining about neurologists? Please disregard if so. ;)
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Postby rainer » Wed Dec 15, 2010 6:19 pm

bruce123 wrote:
These two key questions are important but they are not what we should be investigating first, which is "Does improving venous drainage improve the lives of MS patients and is it safe."


And if it doesn't improve their lives yet is vital to understanding the disease process, should we drop all funding and related studies and move onto the next miracle cure?
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Postby scorpion » Wed Dec 15, 2010 6:55 pm

Direct-MS wrote:From the perspective of having read over 200 papers on CCSVI and closely related issues and having visited three CCSVI treatment/research centres, I found this article misinformed and basically negative.
Quoting Brad Stewart (who have never published a single scientific paper on MS) on CCSVI is like quoting a wino off the street except the wino may be more objective and better informed.
I am awaiting an intelligent, well informed newspaper article on CCSVI which captures both sides of the argument in a "neutral" manner.



Hmmm. Maybe what makes the wino off the street more objective and better informed is the grape extract from the wine? Just a thought.
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Postby jimmylegs » Wed Dec 15, 2010 7:44 pm

hyperbole squares off against arch-nemesis semantics! what happens now do we sound a bell or something? ;)
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Postby scorpion » Thu Dec 16, 2010 3:54 pm

jimmylegs wrote:hyperbole squares off against arch-nemesis semantics! what happens now do we sound a bell or something? ;)


I might have just turned forty but I can still sling words with the best of them. Bring it on!!!!! Somehow I am picturing a MTV "death match" but I would make one damn ugly clay figure.
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Postby ozarkcanoer » Thu Dec 16, 2010 5:26 pm

Don't forget BNAC !!!! They started true blinded trials with no upfront money last year. And thanks to Direct-MS and his challenge grants they are making some progress with the funding. BNAC is studying both the chicken (MS or CCSVI) and the egg (MS or CCSVI). Unfortunately the MS decided NOT to fund BNAC... a great mystery to me.

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Postby jimmylegs » Thu Dec 16, 2010 5:38 pm

hehehe :)
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