Consortium Comments re: CCSVI

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

Consortium Comments re: CCSVI

Postby jay123 » Tue Dec 01, 2009 1:59 pm

From the CMSC web site - To me this is much more positive than the MS Socieities responses, especially point #2-


http://www.mscare.org/cmsc/index.php?op ... Itemid=180

We asked Dr. Alex Rae-Grant, CMSC website's Project Leader for Neurology, to share his expertise and views about this article "The Liberation Treatment: A whole new approach to MS". Here is his reply:

Multiple sclerosis, even in 2009, remains mysterious and has escaped our full understanding. Why do certain people get it? Why does it affect the brain and spinal cord in the way it does? What causes it? The recent interesting work by Zamboni et al raises an idea from far out in left field; could MS be caused, or at least accompanied by narrowing or blockage of the veins that drain the brain and spinal cord? Ok, so none of the 50 years of research in MS so far have suggested this. And people who are known to have blockage of the veins draining the brain (Cortical vein thrombosis) don't get MS. Pathological studies of MS patients have never suggested this. But on the other hand, it's probably good for us to have an open mind, especially when there are new ideas that can be tested, and possibly ones that have a therapeutic option.

Before we all run out suggest that people with MS get stents in their veins, there may be a few steps along the way.

1. It will be important for other centers to independently confirm or refute the ultrasound and or venographic findings of Zamboni et al. This work is beginning at the present time. Adequate care in selecting age and sex matched controls and making sure the tests are not biased will be key.

2. It will be important to understand, if this finding is true, what proportion of the MS population may have such problems. Many in the MS field have felt there are more than one disease within our population; even if 20% of our patients have a venous insufficiency problem, this would be revolutionary.

3. Any therapeutic claims need to have an unbiased methodology to prove benefit. We know that the placebo effect is strong in MS particularly when we are talking about symptoms and not measurable aspects of the disease such as MRI. A randomized trial of therapy in people shown to have such 'stenoses' would be both ethical and necessary before potentially hundreds of thousands of people are subjected to invasive procedures with measurable risk.

The work of Zamboni et al deserves a long, hard, look; it would be wrong to either clamber on board the bus, or to dismiss this out of hand.


About Dr. Alex Rae-Grant
Alex Rae-Grant, MD, recently transitioned from his long-term position at Lehigh Valley Hospital to the Cleveland Clinic. At Lehigh Valley Hospital, he was President of the Medical Staff, Chair of the Ethics Committee, Chief of the Division of Neurology, and founded the Multiple Sclerosis Center of the Lehigh Valley. His role at Cleveland Clinic's Mellen Center is to oversee education about multiple sclerosis in the northeastern Ohio region, assist with clinical trials and be involved with resident and student education at the clinic. He works with regional physicians and Mellen Center staff to distribute approaches to treatment for various aspects of MS.

He was recently awarded the Teacher of the Year award by the neurology residents at the Cleveland Clinic. He is co-director of the neurology clerkship at the Cleveland Clinic and is a Clinical associate professor of medicine at the Cleveland Clinic Lerner College of Medicine. He has previously co-authored two textbooks in neurology, Neurology for the House Officer and 5 Minute Consult in Neurology.

Last Updated ( Wednesday, 25 November 2009 )
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Postby ikulo » Tue Dec 01, 2009 2:22 pm

A well-reasoned analysis with a necessary call to action. thumbs up.
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Postby Lyon » Tue Dec 01, 2009 2:26 pm

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Postby CureIous » Tue Dec 01, 2009 2:36 pm

I'm still in a conundrum oh how they will ever "prove" with any reasonable assertion that any improvements aren't the repeated-until-I-want-to-puke "placebo effect".

I'd love for them to explain to me what hallmarks they will use. Since lesion load is not 1 to 1 to disability, and disability and it's related issues are the ONLY thing that would cause MS patients to seek treatment in the first place, then how can they say that ANY improvement isn't placebo, including the infernal ambulatory issues etc etc?

Anyways I still think the placebo is working great, maybe I'll get fixed for real next time. ;) ;)

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrhodes40 » Tue Dec 01, 2009 2:53 pm

Great assessment! I love it, that's all we want is fair assessment and open minds.

I still wonder if it would be possible to show benefit or not via SWI MRI and skip the ransom---oops! RANDOM-- trials which would have to be randomized to something like standard treatment or surgery--or do fake surgery but that is just not usually required in surgery world because you are fixing something that you can see.

Which brings us back to the "treating stenosis or treating MS " debate.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby ikulo » Tue Dec 01, 2009 2:53 pm

What they would have to do is conduct an experiment where X number of people receive treatments and X number of people get sham treatments. If the amount of improvement (measured in increase/decrease of EDSS on a 5 year timeline, perhaps) of the treatment group has more improvement than the placebo group, and that number is statistically significant, then one would conclude that the benefits of treatment are not just the effect of a placebo.
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Postby ozarkcanoer » Tue Dec 01, 2009 2:54 pm

Quote Dr Rae-Grant,

"Ok, so none of the 50 years of research in MS so far have suggested this."

Has he never looked at the early venous MS pioneers ? I guess Franz Schelling would have something to say about this, let alone all the pre-CCSVI publications on this webpage :

http://csvi-ms.net/en/content/publications-venous-multiple-sclerosis
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Postby CureIous » Tue Dec 01, 2009 3:03 pm

mrhodes40 wrote:Great assessment! I love it, that's all we want is fair assessment and open minds.

I still wonder if it would be possible to show benefit or not via SWI MRI and skip the ransom---oops! RANDOM-- trials which would have to be randomized to something like standard treatment or surgery--or do fake surgery but that is just not usually required in surgery world because you are fixing something that you can see.

Which brings us back to the "treating stenosis or treating MS " debate.


Yes, exactly, if SWI is used as a criteria eventually, then the CCSVI model will by necessity (although of course it will need improvements), need to be accepted also, unless someone comes up with another acronym for MS... I like CCSVI though, it makes folks take a second look!

I think SWI is by far the greatest thing since sliced bread.... Well, let's see, sliced bread is usually processed. Okay ball point pen!

It's too bad us stentees couldn't get some baseline SWI's eh?

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Johnnymac » Tue Dec 01, 2009 3:04 pm

mrhodes40 wrote:Which brings us back to the "treating stenosis or treating MS " debate.


Brings up a whole new debate if all pans out the way its trending. Perhaps the term MS will become more commonly used in the following phrase, "formerly referred to as MS"
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Postby Lyon » Tue Dec 01, 2009 3:07 pm

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Postby ikulo » Tue Dec 01, 2009 3:15 pm

Lyon wrote:Although time is precious, in any MS trial time is the proof.


This is the crux of the matter. Researchers need time to conduct proper experiments, yet we don't have any time to spare.
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Postby CureIous » Tue Dec 01, 2009 3:15 pm

Lyon wrote:
CureIous wrote:I'm still in a conundrum oh how they will ever "prove" with any reasonable assertion that any improvements aren't the repeated-until-I-want-to-puke "placebo effect".
Like anything else, the best you can do is the best you can do.


Although time is precious, in any MS trial time is the proof. If in a CCSVI clinical trial the difference after treatment is as profound as people are representing, in a large number of treated people it should soon begin to become obvious that NO ONE is having relapses and NO ONE is having enhancing lesions and NO ONE is experiencing increase of and/or new symptoms. In that same light, any kind of profound difference is going to be obvious. If the differences aren't profound then CCSVI has been misrepresented and it will be a bad scene.

To be honest, I'm pretty impressed with the fact that, what seem to be a pretty large number of thisisms members who have been treated, I haven't heard of anyone mention any kind of progression to date.


Yes Lyon, what you say is true. Very true. We're exactly (pretty much) where we were when I first came here, on the "time will tell" merry-go-round lol. Not that I mind placebo effect being mentioned, I understand that that is a very real phenomena, subject to as many vagaries as there are people. I just don't want anyone telling ME that I'm placebo haha. It's always the other guy! Fair enough. I hear what you are saying and this train is leaving the station ever so slowly, going up a steep grade but when it plateaus it will be chugging along nicely...

I long for the day when the fringe element will be those still clinging to the old model as the be all end all... :) Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby zipfed » Tue Dec 01, 2009 3:48 pm

I dont post very much but I am going to start by saying that I have read a lot of negitive things from doctors as there first responce to anything new, now Dr. Alex wasent real negitive but I would not take what he said as positive either, and I am tired of these doctors and researchers with a wait and see attitude I mean come on this disease was first documented 171 years ago and our best treatment is to surpress our immune systems. How about the fact that they keep studing EAE in mice when it is known that EAE is not a good model for MS! here is a good idea Dr. Alex and every other doctor in the world until you get off you ass and come up with something yourself sit down and shut up! to bad they all couldent have MS then possible something would get done.

Sorry for the rant but I am just getting more and more pissed by the day and I have only been putting up with this for a year.
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Postby jr5646 » Tue Dec 01, 2009 4:03 pm

amen zipfed ... i can't agree more. any neuro is going to get defensive, considering their "bread and butter" patients are going to start to see vascular specialists... let the mass exodus begin
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Postby happydance » Tue Dec 01, 2009 4:39 pm

zipfed

Image

Totally agree. Let's not waste another 10 years!
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