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Re: Possible problems with stents?

Posted: Sat Jan 30, 2010 11:38 am
by HarryZ
No one. You know I find no greater enjoyment than reading some of your responses :lol:
Think you need to find a far more ineresting hobby :)
Harry! You've been buying into cheer's interpretation of "proper science" for too long. The situation you describe is the very epitome of the need for blinded, placebo trials.
Again, you assume wrong, Bob. I spent very little if any time reading about CCSVI until I saw that long interview with Zamboni on Canadian television. I then checked with a friend who has been involved with MS research for a number of years and was told that his work certainly deserved a lot of merit and more research. And I'm not sure just how one would do a placebo controlled trial with CCSVI surgery!! Cut them open at the neck and then not tell them if the procedure was actually done or not?

The drug companies do non blinded trials...when they compare their drug to the competitors to try and show theirs is better.
Zamboni is running the trial and wants good results and the patients want good results and if we all write down good results the world is good right?
Bob, oh Bob.....Zamboni wasn't running a trial in terms of what a trial is. More of a study by identifying MS patients who have blocked jugulars, operating on them to clear the blockage and looking at the results. This is surgery, not the use of drugs. He admitted during his interview that his discoveries were immensely interesting and was surprised at what he discovered. Now comes the real work at duplicating what he did.
Problem is that its far too easy to create the results you desire in that situation and that's also why the "science" of CCSVI has been scoffed at so far.
"Create the results"??!! Good grief! He experimented with a procedure after he discovered the situation with MS patients' jugular veins. And who has scoffed at his science....those MS docs who have their heads buried in the sand and can't look outside their auto-immune protective boxes. There are already 3 or 4 centers in North America who have shown an interest at doing more research with CCSVI. The Canadian MS Society has invited those who want to do this work to apply for research grants. Are these people "scoffing" at Zamboni's initial finds. Hardly!
In most situations "independent replication" is usually considered to mean being replicated by someone other than people that the founder has been extensively collaborating with.
Then you must have not read anything about any of the other researchers who have shown an interest in this work.
In order for the theory of CCSVI to move forward, an admitted and fair hurtle for Zamboni to overcome is a foolproof method of CCSVI diagnosis that he can share without having to train people one on one and therefore be considered "independent".

I agree and that is the next step that these other researches want to start. It is going to take a lot of time and effort. But with surgery vs drugs, the results of whether this really works in the majority will come a lot faster. At least we won't have a Biogen or Elan involved :wink: They are probably already planning more strategy on how to discredit Zamboni's work!

Take care.


Posted: Sat Jan 30, 2010 11:53 am
by HarryZ
Elane delack doesn't know what she is talking about. I talked to her and one other person on her drug. It sounded to me like neither of them had ms.
Well, I'm going to respectfully disagree with your comment about Elaine. She has spent a number of years doing research with MS and has utilized medical researchers' expertise along the way. There was one double blinded, placebo controlled clinical trial done on Prokarin and the MS Journal (University of Pennsylvania I believe) published the trial. It stated that the science was good, the results promising and further research was merited. Problem is Elaine doesn't have the kind of funding required for this kind of ongoing research.

My wife (passed away over 2 years ago) started on Prokarin in 2000. She was SPMS at the time and the Prokarin relieved and in some cases eliminated many of her symptoms. Her quality of life immensely improved.
Is Prokarin for everyone? Nope. Last count was about 1/3 got multiple symptom relief, 1/3 one or two symptom relief and 1/3 no effect whatsoever. Sound familiar when it comes to the other MS drugs?

BTW, your comment that Elain doesn't have MS is pure nonsense!

It is very unfortunate that Prokarin sent you into an exacerbation. But with MS nobody really knows if an exacerbation is caused by starting on a drug or not. Some people on the CRABs or Tysabri have the same reaction and end up with a major flare.

As for complaining about the $ 200 a month for Prokarin....geez, what does a CRAB drug or Tysabri cost per month. Prokarin, if it works, sounds like bargain!


Re: Possible problems with stents?

Posted: Sat Jan 30, 2010 1:35 pm
by Lyon


Posted: Sat Jan 30, 2010 4:33 pm
by prairie
why are you so mean and insulting to people who post? I don't understand the cruelty. Can you explain? :?:

Posted: Sat Jan 30, 2010 4:47 pm
by Lyon


Posted: Sat Jan 30, 2010 5:27 pm
by Squeakycat
It is fascinating to watch Dr. Zamboni's work which has been presented in peer-reviewed journals and at major scientific meetings, be criticized as poor science.

Unlike proponents of the viral and auto-immune theories of MS which were solidly proven in one major clinical trial, Zamboni's work is clearly inadequate since he has only tested and treated a small number of people and presented the work in eight major journal articles over the past three years.

To listen to his critics, apparently real science starts right off with large-scale, blinded, placebo-controlled clinical trials (and ad hominem attacks against those who would dare to question the conventional wisdom in influential scientific journals such as the National Post.) My bad. I thought science was about someone challenging the conventional wisdom in a way that could be independently replicated. Not so. Science is about consensus, regardless of the validity of that which all reputable scientists agree is capital T Truth.

Why bring up BNAC, a group that has conducted many clinical trials and knows a thing or two about imaging, which felt that Zamboni's theories made enough sense to test them in a group of 1,700 people? Most likely just more junk science like that of Dr. Zamboni.

Stanford? Georgetown? Might as well be talking about Podunk Jr. Beauty School. Not even worth mentioning.

Finally, as for Sham Surgery, there may be some ethical issues involved.


Re: Possible problems with stents?

Posted: Sat Jan 30, 2010 8:35 pm
by HarryZ
Maybe I should change my statement to I used to find your responses interesting. An MS researcher friend of yours (yawn) finds CCSVI deserves merit and more research? I have a friend who lives near area 57. We'll have to get together some time and exchange the opinions of our friends!
Nobody is forcing you to read and/or comment about my posts. Don't really care if you are interested or not in those I know involved in MS research. This person knows about 10 times more than you and me combined when it comes to MS so I'll believe what is said from that person a lot more than what I read any place else.
I believe for angioplasty they no longer have to resort to decapitation and now go in through the groin area. While invasive, I'm not sure that fake angioplasty would be so invasive that it would be considered unethical to "go through the motions" without altering someone's medical situation for the time duration of the study.
Faking any kind of surgery on anyone would be unethical.
Maybe, just maybe you are coming to your senses! That's the point I was trying to make is that it's not such a sure thing that someone has found good results if the study wasn't under controlled conditions and instead is a "fishing trip" to produce the results the researcher wants to see.
You seem to be really hung up on what kind of results Zamboni has discovered in his early work. He hasn't "fished" for anything nor produced results that were falsely created. Geez Bob, he simply discovered that 100 MS patients all had blocked jugular veins, he unblocked them and they ended up with symptom relief. This is something that has never been seen in MS patients before and it certainly opens up some interesting further research. Where it leads to nobody knows at this point. But please don't trash his work because it wasn't part of a 1000 patient, double-blinded, placebo controlled trial. It's going to take some time to see what further results can be learned.
You obviously are a very objective and open minded person Mr. Z. After your electroshock treatment and a little nap maybe we can talk some more.
Get a life, Bob....this forum isn't to ridicule people's ideas and your sarcasm is doing just that. You can disagree with my ideas or thoughts but please don't play the ridicule game. This is a decent thread and it doesn't need this kind of attitude in it.
You bring up a good point Harry. Early on the CCSVI proponents realized that instilling the fear of being tarred and feathered is an excellent substitute for being able to produce scientific substance. Not that the evidence will never exist, but it doesn't at this point.
Not sure why you are insisting that CCSVI, after 100 patients , has to provide the scientific substance that drug trials take months if not years to discover. Zamboni has only been on to this for two years and the research has been limited. The early results are promising, they are creating some hope and it's going to take a lot more research to see where this goes.


Posted: Sun Jan 31, 2010 3:40 am
by jimmylegs
guys... please...

Posted: Sun Jan 31, 2010 7:36 am
by William57
I am reading this two monologues with a growing astonishment. All research begins when a someone has discovered something by going a not logic path of the on going research/experiences.

That very first finding will not be done by all rules of good research (double blind, a lot of experiences, etc.). Mostly this is caused by the researcher is on his own and/or is going a path nobody wants to go.

The aeroplane is invented by some silly guys that were convinced that that the could fly some day. Most people thought they should be locked up. Edison was determined to invent the light bulb, whereas in general everybody was happy with gas light.

Dr. Zamboni has done a tremendous job by thinking and researching outside the box (something every researcher should do), and now the next phase is going on: doing the research in a way that is generally accepted by 'everybody' in the medic world.

That is all!

So, please do not argue if Dr. Zamboni has done the right procedures yes of no. If he has done the 'right' procedures/rules, probably we would now have a Rebif #2.

Posted: Sun Jan 31, 2010 8:24 am
by Lyon

Posted: Sun Jan 31, 2010 10:01 am
by HarryZ
Lyon wrote:
jimmylegs wrote:guys... please...
Entirely my fault jimmy. I haven't been treating Harry with the respect he deserves, not just these last couple posts but a long string of them.

Although he's ornery towards big pharma he's really a good natured guy and, though I fully intended to, I shouldn't have pushed him so far.

For what reason I don't know, but I guess I was just trying to see what his limits were.

Sorry Harry.

Apology accepted and I admire you for writing this post.

Our focus should be directed toward a sharing of ideas and thoughts.

Hopefully, as Williams wrote earlier, Zamboni has found something "outside the box" that may help MS patients world-wide. It will take a lot of research by a lot of people to prove or disprove his initial findings.


Posted: Sun Jan 31, 2010 10:21 am
by Lyon

"The Liberation Treatment"

Posted: Sun Jan 31, 2010 12:40 pm
by harryp
Hi Guys,
I read some of the latest posts with surprise and disappointment. Surely the liberation treatment offers hope where there has been little on none in the past? We have progressed from treating the symptoms of MS to a possible cure and reluctantly I must use the word "possible" for I am a believer!
In the regrettable absence of enthusiasm from the medical profession especially here in the UK we must concentrate our efforts in being the driving force to promote research into CCSVI and its treatment.
Meanwhile - Since time is a commodity in short supply among MSers surely it is fair to encourage those who choose to short circuit the bureaucracy by going for treatment ASAP. Lets face it I haven’t yet heard anyone suggest that stenosis of the jugular is good for you!! And when we have a few hundred successful interventions under our belt may be the medical profession will agree to clinical trials.
My MSer says she would rather die in the attempt (may god forbid!) than live her life under the scourge of MS.
Think On

Posted: Sun Jan 31, 2010 1:22 pm
by HarryZ
In truth, I don't have a problem with Zamboni or what he has presented. My problem is with it's interpretation and claims and inferences by others.

I've been on the net long enough to understand the shear excitement that some people have when something like Zamboni's work comes along. I, too, over the years have become excited about so many "new treatments" that have been announced. But I learned a long time ago to temper this initial excitement because as most often happened, the early promise always seemed to turn into eventual total disappointment.

There have been some very exuberant reactions to CCSVI that I have read on this forum and while I can understand why, I know very well that before it ever has a chance of becoming a treatment for MS, there is more than a ton of work to happen. I like the science so far but liking it and having it turn into a viable treatment are two points very far apart.

As you know, my wife had MS for about 35 years before she passed away. I can't count the number of hopeful treatments that came along and continued on into the trash can during this time. I'm hoping that CCSVI will be different for the sake of MS patients everywhere.


Posted: Sun Jan 31, 2010 3:33 pm
by cheerleader
Hi all-
I started this thread to discuss the risks of angioplasty and stenting, for those who were looking into having their very real venous occlusions fixed surgically. I hope we can get back to that topic. Are there any recent developments in folks who have been stented or received angioplasty? Should we add any new items to the list on page one?
Please let us know, thanks,