This Is MS Multiple Sclerosis Knowledge & Support Community

Yes, I agree with Harry: "medically accepted" is a worthless term. Just take my husband's experience with catheters here in France. The French seem to like Foley catheters and the Americans hate them. Here, self cathing is very rare (so the pharmacist said to me)...it's all a matter of education.

So is the term "MS expert". What makes somebody expert in MS? And of what use is he to the patient?

sou

MS expert refers to someone who has spent their life researching and studying this nasty disease. How they have wasted their time! All they need to do is forget their years of research and look at Zamboni's one small study that has PROVEN that MS is caused by blockages to the brain, spine, etc. Research is slow. I believe CCSVI gives people who suffer from MS a quck out. Simply get a stent in your neck and your MS is cured or at a stand still. Anyone who questions this hypothesis makes you uncomfortable so you lash out at them becuase that quick easy answer is what you are looking for. Critical thinking be gone!!! No room for that here. I believe that the cure to MS will come but it will be a slow and tedious process. I hope one day this forum can be what it used to be. Your CCSVI skeptics are my critical thinkers. Thankfully there are still a few remaining on this board.

Same to you Harry. I'm surprised you weren't out doing some last minute shopping like I just was. As it turned out, lady pulling out of a parking lot didn't see me coming and hit me in the back left fender.

I had a feeling that I shouldn't go out but I wanted to get a bag of potatoes and one of those fancy new wrapping paper cutters.

Bob,

When are you going to learn that last minute Xmas shopping is not good for you I gave that up a long time ago and am much the better for it today!

I guess that all depends on how you define "merit". To me, merit is something that has some proof behind it or substance to it.

I guess a lot depends on what one accepts as proof. The drug makers told us that they had proof that the CRABs worked. The data that they presented as "proof" was so manipulated and worked over to get their approval that in the long run, the efficacy of these drugs was a very far cry from what they were preaching.

I've noticed that even those who are reserved about CCSVI minimally give credit (incorrectly) that a specific correlation or association with MS incidence and CCSVI has been proven. I don't think the researchers involved are dishonest or dumb so I concede that incidence of stenosis in those with MS probably really is very high. The problem is that information is meaningless if it isn't also validly shown that the general public very seldom meets that same stenosis criteria, and that hasn't been convincingly shown yet.

I think that you may be reading too much into some of the comments that have been going around. What have we got? Zamboni takes 100 MS patients, discovers that all of them have a degree of jugular vein blockage. Scientifically we know that this has the possibility of creating the formation of additional iron in the brain. This we know is not good. Zamboni clears this blockage in all of the patients and sees a large improvement of their MS symptoms. You can't help but have interest in this kind of study.

So what does it prove? From a scientific view, one would have to be blind and deaf not to do more research with this kind of result. And that's exactly what is going to happen. Other researchers will try and duplicate this result and who knows what it will lead to. It provides a glimmer of hope to finding the answer to MS....and to date the previous research results have been nothing but abysmal!

So things are at the point that it doesn't matter that the substance of the statement is true but it could have been said in a nicer way?

One only has to look at who is making the statements, see where these peope fit into the world of MS research and who they work for. And those who make big dollars from the current theory will likely be the most vocal in discrediting Zamboni's work.

Harry

scorpion wrote:MS expert refers to someone who has spent their life researching and studying this nasty disease. How they have wasted their time! All they need to do is forget their years of research and look at Zamboni's one small study that has PROVEN that MS is caused by blockages to the brain, spine, etc. Research is slow. I believe CCSVI gives people who suffer from MS a quck out. Simply get a stent in your neck and your MS is cured or at a stand still. Anyone who questions this hypothesis makes you uncomfortable so you lash out at them becuase that quick easy answer is what you are looking for. Critical thinking be gone!!! No room for that here. I believe that the cure to MS will come but it will be a slow and tedious process. I hope one day this forum can be what it used to be. Your CCSVI skeptics are my critical thinkers. Thankfully there are still a few remaining on this board.

Hmmm...I think someone has REALLY missed the boat here!

HarryZ wrote:When are you going to learn that last minute Xmas shopping is not good for you I gave that up a long time ago and am much the better for it today!

Sadly I didn't need to go but was bored and only wanted to get out of the house. Yeah, I should have known better because everyone was in a hurry.

HarryZ wrote:The drug makers told us that they had proof that the CRABs worked. The data that they presented as "proof" was so manipulated and worked over to get their approval that in the long run, the efficacy of these drugs was a very far cry from what they were preaching.

You won't get an argument from me on that account. I have no love for the pharmas and my wife was only on Rebif for a month or so before she got her fill of self injecting, but I'm not sure what you're driving at....the failure of the CRABS is some kind of proof of the success of CCSVI?? The pharmas are so vile that you can automatically have confidence in what the little guys says despite the absence of evidence??

XX

scorpion wrote:MS expert refers to someone who has spent their life researching and studying this nasty disease. How they have wasted their time! All they need to do is forget their years of research and look at Zamboni's one small study that has PROVEN that MS is caused by blockages to the brain, spine, etc.

And of what use is their research to the patient of today? What exactly can be done for MS?

scorpion wrote:Research is slow. I believe CCSVI gives people who suffer from MS a quck out. Simply get a stent in your neck and your MS is cured or at a stand still. Anyone who questions this hypothesis makes you uncomfortable so you lash out at them becuase that quick easy answer is what you are looking for.

Do you have MS? If you had a blocked vein in your leg, would you open it? If you, also, had one in the neck and had INDICATION that it COULD possibly make MS a little better, would you open it, too? Stenting is dangerous at the moment, but balloon angioplasty is a temporary solution until things keep going.

scorpion wrote:Critical thinking be gone!!! No room for that here. I believe that the cure to MS will come but it will be a slow and tedious process. I hope one day this forum can be what it used to be. Your CCSVI skeptics are my critical thinkers. Thankfully there are still a few remaining on this board.

Please, define critical thinking to me, the stupid fanatic that does not understand what it is.

About the cure, that is your opinion. It doesn't necessarily mean that it is going to happen that way. And it doesn't mean that the mice super-dooper breakthrough-ists are going to find it and EAE is the way to go.

And what did exactly this forum use to be?

sou

Brainteaser wrote:Wow, seems my flippant remarks have stirred the septic skeptic.

First, Merry Christmas Phil,
Second, "septic" skeptic?? Just when we were getting along so well.

Brainteaser wrote:I must have hit a nerve - maybe the hip pocket nerve!?

Nothing of the sort. I try to include pictures whenever possible for the benefit of the Australians (I honestly didn't mean that but I liked that it was such an awful thing to say)

BAH HUMBUG

You won't get an argument from me on that account. I have no love for the pharmas and my wife was only on Rebif for a month or so before she got her fill of self injecting, but I'm not sure what you're driving at....the failure of the CRABS is some kind of proof of the success of CCSVI?? The pharmas are so vile that you can automatically have confidence in what the little guys says despite the absence of evidence??

My point here was to look at your comment of merit being something that had proof behind it. While I agree with merit requiring proof, it was the reliability of "proof" in the MS world of medicine. The "proof" that we have today comes from big pharma who has produced all these drugs that make them billions and do little for MS patients. And we both know my trust in MS big pharma's data.

Harry

NC
Posted: Wed Jan 06, 2010 1:03 am Post subject: Our NMSS and a puzzling review of CCSVI

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This seems a fair assessment and I am glad he does recognize Zamboni is "practicing good science".




Medpage Today ~ "Radical MS Theory Stirs Interest"
Excerpts from this article quoting John Reichert:

"Most experts regard it as a long shot" that needs to be studied, said John Richert, MD, executive vice president for research and clinical programs at the National Multiple Sclerosis Society.

While the results seem promising, they fall well short of proof, according to the MS society's Richert. "This is something that requires a well-controlled, blinded prospective study," he said.

One danger is that patients may jump the gun, Richert said. "There are a number of patients who may be expecting that they can just go to a vascular surgeon and get this done," he said.

"Our feeling is that this is an experimental procedure and that it should be undertaken by people with MS only as part of a formal clinical trial," Richert added.

Richert added that the results of Zamboni's surgical trial -- while good science -- aren't enough yet to overturn the existing paradigm.

Among other things, Richert said, it's possible that the apparent benefit was a long-lasting placebo effect.

In clinical trials with a placebo, he noted "reproducibly and consistently, the group on placebo does better on the trial than they did prior to entering the trial."

Zamboni and colleagues measured MS symptoms in patients before and after the procedure, rather than comparing surgical and control groups.

The changes that they saw, Richert said, are similar to those "that we tend to see in placebo groups in major drug trials."

He added that the MS society is "anticipating" proposals for a randomized trial of the surgery by its February grant deadline. The Canadian MS society said earlier this week that it will support such research if a proposal is made.

_________________

Hi.

Placebo controlled trials can't apply to surgical procedures. What is a "placebo surgical operation"?

However, the placebo effect is indeed a consideration but what Zamboni proved is that the procedure is safe for MSers to undergo, with a trend towards being neurologically effective. I wonder how many of the available surgical procedures, from dental to open heart, have been specially studied and proven safe for people with MS.

Since it is proven safe, it is reasonable for MS patients to seek medical intervention for correcting CCSVI and slow perfusion, not MS. Confusing MS with CCSVI is something that I don't like hearing from an "expert", because he indirectly implies that this could be somehow involved in the cause of MS.

sou(r)

Does anyone have the protocol for the ultrasound of the jugular vein?

Scorpion,

Thanks for posting those comments from John Richert of the NMSS. It's not surprising that we are seeing this kind of communication from the NMSS. Like I said in other posts, the proponents of the current line of thinking for MS will be circling the wagons to protect their long held theory about the disease.

Zamboni's work is but the tip of the iceberg when it comes to what's going on in the MS patient. I've posted a link to a radio blog show hosted by Elaine Delack, the inventor of Prokarin. If anyone has 30 mins to listen to this you will hear some interesting information about what may be going on in the background to cause this blockage of the jugular veins.

http://www.blogtalkradio.com/search/ccsvi/

Click on the "Play" icon on the far left side of the radio show options.


Harry