This Is MS Multiple Sclerosis Knowledge & Support Community

..

pairOdime wrote:Great news CCSVIhusband concerning Dr. Rosenfeld's (and the other docs mentioned) interest in CCSVI and this very promising area of treatment.

Isadore Rosenfeld, M.D., a professor of medicine at New York Hospital Weil Cornell Medical Center, is widely recognized as one of this country's preeminent doctors. His regular appearances on network television have garnered a devoted nationwide following of viewers seeking the latest information on health and medical issues.

With nine best-selling books to his credit (as well as a textbook for doctors), Dr. Rosenfeld is one of the leading and most effective proponents of the medical enlightenment of the American public. He is a contributing editor of Parade Magazine, with 82 million readers.

Dr. Rosenfeld is an attending physician at New York Hospital and Memorial Sloan Kettering Cancer Center and Rossi Distinguished Professor of Clinical Medicine at New York Hospital Weil Cornell Medical Center.
He was president of the New York County Medical Society and was a member of The Practicing Physicians Advisory Council for the Secretary of Health and Human Services.

In addition to maintaining a private practice in Manhattan, Dr. Rosenfeld has served as a consultant to the National Institute of Health on such task forces as arteriosclerosis, sudden death and hypertension.
He is the recipient of the first award for the achievement in cardiovascular medicine and science by the New York affiliate of the American Heart Association.

Dr. Rosenfeld received the United Nation's Citizen of the World Award in November 1999 and the San Valentino D'Oro Gold Medal for Medicine.

Let me correct this just a bit. I don't know if he's interested per se.

But he answers emails if you send them about medical things he's able to discuss ... he promotes that on his interviews on FoxNews Sundays ... and he's always answering questions about new studies, and new topics in medicine (he must research the questions for the show quite extensively).

As a distinguished cardio guy, I'll imagine he's heard of it (CCSVI - considering I know people have emailed him about it) ... beyond that, I'm not going to speak to other pieces of his interest or knowledge, other than I'm sure he knows some of the doctors we all talk about and could consult with them.

I'm sure he has the contacts to learn more about this though ... (maybe we could put him in touch with Dr. Sclafani, Dake, Cummings, Haskal, - who is the Dr. at Columbia?, Sinan, Siskin, Mehta, etc ... etc ... etc).

..

I still like your disclaimer, Lyon, at the bottom of your posts, it's a good public service message right there.

I repeat myself too often enough!
"I agree with Dr .Sclafani"
"Clotting is scary and bad and a genuine risk"
"The doctors are all doing things differently, omg"
"CCSVI is a breakthrough"
"Canadians are getting a raw deal"

..

Lyon wrote:

Cece wrote:I repeat myself too often enough!
"I agree with Dr .Sclafani"
"Clotting is scary and bad and a genuine risk"
"The doctors are all doing things differently, omg"
"CCSVI is a breakthrough"
"Canadians are getting a raw deal"

I don't get it. Those aren't things that I said and, other than "I agree with Dr Sclafani" I don't remember you saying any of those things. Help me out here.

Just speaking offhand, and not trying to join the debate in this thread, if you were to distill what I've said in my 2826 posts down, these are a few of my main points that I tend to repeat with frequency, if not in these exact words, then in essence.

I say this because, even if our skeptics repeat themselves, so do the guys on the other side of the fence, myself as much as anyone.

..

Lyon wrote:I think basing opinion only on what you want to believe is a completely acceptable alternative to logic.

We are not forming opinions based on what we want to believe, we are basing our opinions on proposed theories, peblished papers, anecdotal evidence and personal experience.

You're in no position to talk about logic though. In what respect is actively encouraging people to undergo a risky (sepsis, cancer) procedure, with very little evidence for its efficacy one minute and then the next advising people against a much less risky procedure with slightly more evidence for irs efficacy and a great deal of anecdotal evidence to back it up logical? Obliterating and reconstructing the immune system is certainly a simpler concept than CCSVI and all the unknowns which surround it. Perhaps you select the one treatment to applaud and the other to vilify because the concept is so easy to get your head around?

And I don't think it in any way illogical to pay attention to anecdotal evidence, to peoples personal stories and videos.

I really don't think that you are driven by a search for logic, I think that you just like being contrary. Making ridiculous statements like "a theory without the least bit of non-anecdotal evidence to support it," ridiculous because you know it to be untrue, whilst at the same time harping on about 'facts' and 'logic.' There's nothing logical about making statements you know to be untrue!

On the other hand I think it quite illogical to put the improvements seen in all those nefore and after videos down to only the placebo effect or the disease's natural progress - Gerry Peters walking tall after an unremitting 20 year decline, Linda Torbert tracking her finger without going cross-eyed for the first time in 15 years, Denise Manley making a step exercise video. I think that it's really illogical to think that, from one day to another, there was the huge coincidence of the illness following its natural path and improvements spontaneously happening, or that so many life changing results for so many people can be down to the placebo effect and the placebo effect alone. I think your the ones failing to use logic!

L wrote:

Lyon wrote:I think basing opinion only on what you want to believe is a completely acceptable alternative to logic.

We are not forming opinions based on what we want to believe, we are basing our opinions on proposed theories, peblished papers, anecdotal evidence and personal experience.

You're in no position to talk about logic though. In what respect is actively encouraging people to undergo a risky (sepsis, cancer) procedure, with very little evidence for its efficacy one minute and then the next advising people against a much less risky procedure with slightly more evidence for irs efficacy and a great deal of anecdotal evidence to back it up logical? Obliterating and reconstructing the immune system is certainly a simpler concept than CCSVI and all the unknowns which surround it. Perhaps you select the one treatment to applaud and the other to vilify because the concept is so easy to get your head around?

And I don't think it in any way illogical to pay attention to anecdotal evidence, to peoples personal stories and videos.

I really don't think that you are driven by a search for logic, I think that you just like being contrary. Making ridiculous statements like "a theory without the least bit of non-anecdotal evidence to support it," ridiculous because you know it to be untrue, whilst at the same time harping on about 'facts' and 'logic.' There's nothing logical about making statements you know to be untrue!

On the other hand I think it quite illogical to put the improvements seen in all those nefore and after videos down to only the placebo effect or the disease's natural progress - Gerry Peters walking tall after an unremitting 20 year decline, Linda Torbert tracking her finger without going cross-eyed for the first time in 15 years, Denise Manley making a step exercise video. I think that it's really illogical to think that, from one day to another, there was the huge coincidence of the illness following its natural path and improvements spontaneously happening, or that so many life changing results for so many people can be down to the placebo effect and the placebo effect alone. I think your the ones failing to use logic!

+1 ... absolutely. And anyone who has been successfully liberated or loves someone who has been successfully liberated will say the same. (maybe not quite with the diction of brits ... but all the same).

..

captboo, you said it all-so nicely-so politely-so truthfully. but the beat goes on.

whoops, what am i doing here now? i was here earlier today and captboo was the last post. figured that might be the end of it, but here we all are again. "guess i got nosey" awh, might learn something-hey you never know.

so, we either pass it by or read the opinions. maybe it's good to keep the blood pumping????? keeps us on our toes so to speak.

Lyon wrote:

L wrote:We are not forming opinions based on what we want to believe, we are basing our opinions on proposed theories, peblished papers, anecdotal evidence and personal experience.

I'm not clear on the value you find in the distinction between "anecdotal evidence and personal experience" which seem nothing more than different names for the same thing to me.

Who says I am making a distinction? They are synonymous, aren't they? See, nitpicking, arguing for the sake of it.

Proposed but unsubstantiated theories in themselves don't hold any value and I guess it doesn't serve any purpose discussing the fact that you evidently assign much more value than most to published articles based on substandard studies. All in all if the above are sources of comfort to you, I support you.

"Proposed but unsubstantiated theories in themselves don't hold any value " ?
So you mean the theory of CCSVI, indeed any theory (like the earth being round) is, or was (in the case of the theory about the earth) of no value until validated? By what measure do you judge value by? I mean, it holds value for me personally because it has improved the quality of my life (which is what you mean by 'source of comfort' I am guessing). Or perhaps I've misread the whole statement, it's a little cryptic..

L wrote:You're in no position to talk about logic though. In what respect is actively encouraging people to undergo a risky (sepsis, cancer) procedure, with very little evidence for its efficacy one minute and then the next advising people against a much less risky procedure with slightly more evidence for irs efficacy and a great deal of anecdotal evidence to back it up logical? Obliterating and reconstructing the immune system is certainly a simpler concept than CCSVI and all the unknowns which surround it.

I have special interest in the Hygiene Hypothesis and rebooting the immune system, neither of which bear any resemblance of what you mention. If you'd like, please explain a little more accurately so that I can determine what you're talking about.

What is unfamiliar about High Dose Cyclophosphamide? It carries a significant risk of sepsis, of bladder rupture (I forget the medical name for the condition) and of cancer in later years following treatment, was that the unfamiliar part?

L wrote:And I don't think it in any way illogical to pay attention to anecdotal evidence, to peoples personal stories and videos.

I absolutely agree. I can't imagine how anyone with any sense of curiosity wouldn't have interest, while remembering at the same time that the value in an uncontrolled environment is extremely limited, even confounding.

L wrote:I really don't think that you are driven by a search for logic, I think that you just like being contrary. Making ridiculous statements like "a theory without the least bit of non-anecdotal evidence to support it," ridiculous because you know it to be untrue, whilst at the same time harping on about 'facts' and 'logic.' There's nothing logical about making statements you know to be untrue!

I disagree with every bit of what you said but I'm at a loss on how to argue against what you don't think and have a chance of changing your mind.

L wrote:On the other hand I think it quite illogical to put the improvements seen in all those nefore and after videos down to only the placebo effect or the disease's natural progress - Gerry Peters walking tall after an unremitting 20 year decline, Linda Torbert tracking her finger without going cross-eyed for the first time in 15 years, Denise Manley making a step exercise video. I think that it's really illogical to think that, from one day to another, there was the huge coincidence of the illness following its natural path and improvements spontaneously happening, or that so many life changing results for so many people can be down to the placebo effect and the placebo effect alone. I think your the ones failing to use logic!

Earlier tonight someone pissed me off and in that post I hinted that they were experiencing placebo effect, otherwise I don't directly attribute anyone's experience to placebo. I DO often point out that for anecdotal evidence to be of any value efforts need to be control the situation and efforts made to determine if and how much placebo is responsible for.

So, if you don't attribute it to the placebo effect then it might be wise not to post on this forum with the sole intent, as you claimed it was earlier, of expressing your doubts regarding the procedure and, effectively, discouraging people to seek CCSVI treatment! But I think that you are just arguing for arguments sake.

L wrote:

Lyon wrote:

L wrote:We are not forming opinions based on what we want to believe, we are basing our opinions on proposed theories, peblished papers, anecdotal evidence and personal experience.

I'm not clear on the value you find in the distinction between "anecdotal evidence and personal experience" which seem nothing more than different names for the same thing to me.

Who says I am making a distinction? They are synonymous, aren't they? See, nitpicking, arguing for the sake of it.

Proposed but unsubstantiated theories in themselves don't hold any value and I guess it doesn't serve any purpose discussing the fact that you evidently assign much more value than most to published articles based on substandard studies. All in all if the above are sources of comfort to you, I support you.

"Proposed but unsubstantiated theories in themselves don't hold any value " ?
So you mean the theory of CCSVI, indeed any theory (like the earth being round) is, or was (in the case of the theory about the earth) of no value until validated? By what measure do you judge value by? I mean, it holds value for me personally because it has improved the quality of my life (which is what you mean by 'source of comfort' I am guessing). Or perhaps I've misread the whole statement, it's a little cryptic..

L wrote:You're in no position to talk about logic though. In what respect is actively encouraging people to undergo a risky (sepsis, cancer) procedure, with very little evidence for its efficacy one minute and then the next advising people against a much less risky procedure with slightly more evidence for irs efficacy and a great deal of anecdotal evidence to back it up logical? Obliterating and reconstructing the immune system is certainly a simpler concept than CCSVI and all the unknowns which surround it.

I have special interest in the Hygiene Hypothesis and rebooting the immune system, neither of which bear any resemblance of what you mention. If you'd like, please explain a little more accurately so that I can determine what you're talking about.

What is unfamiliar about High Dose Cyclophosphamide? It carries a significant risk of sepsis, of bladder rupture (I forget the medical name for the condition) and of cancer in later years following treatment, was that the unfamiliar part?

L wrote:And I don't think it in any way illogical to pay attention to anecdotal evidence, to peoples personal stories and videos.

I absolutely agree. I can't imagine how anyone with any sense of curiosity wouldn't have interest, while remembering at the same time that the value in an uncontrolled environment is extremely limited, even confounding.

L wrote:I really don't think that you are driven by a search for logic, I think that you just like being contrary. Making ridiculous statements like "a theory without the least bit of non-anecdotal evidence to support it," ridiculous because you know it to be untrue, whilst at the same time harping on about 'facts' and 'logic.' There's nothing logical about making statements you know to be untrue!

I disagree with every bit of what you said but I'm at a loss on how to argue against what you don't think and have a chance of changing your mind.

L wrote:On the other hand I think it quite illogical to put the improvements seen in all those nefore and after videos down to only the placebo effect or the disease's natural progress - Gerry Peters walking tall after an unremitting 20 year decline, Linda Torbert tracking her finger without going cross-eyed for the first time in 15 years, Denise Manley making a step exercise video. I think that it's really illogical to think that, from one day to another, there was the huge coincidence of the illness following its natural path and improvements spontaneously happening, or that so many life changing results for so many people can be down to the placebo effect and the placebo effect alone. I think your the ones failing to use logic!

Earlier tonight someone pissed me off and in that post I hinted that they were experiencing placebo effect, otherwise I don't directly attribute anyone's experience to placebo. I DO often point out that for anecdotal evidence to be of any value efforts need to be control the situation and efforts made to determine if and how much placebo is responsible for.

So, if you don't attribute it to the placebo effect then it might be wise not to post on this forum with the sole intent, as you claimed it was earlier, of expressing your doubts regarding the procedure and, effectively, discouraging people to seek CCSVI treatment! But I think that you are just arguing for arguments sake.

L Lyon is not the one telling people to not seek the liberation procedure it is Zamboni himself who said to wait to get the procedure until further clinical trials are conducted. I agree with Zamboni. I do not believe ANYONE should get the procedure until there is more information on CCSVI and than if it does exist until we find out what effects it has on people with MS. There I said it(gasp). However what it comes down to is a personal decision and certainly if someone believes that it is the treatment for them they should go for it.

..

scorpion wrote:L Lyon is not the one telling people to not seek the liberation procedure.

He's not telling people directly, he dissuades them with his mantra.

Lyon - HDC is, comparatively speaking, very risky. Ask any neurologist. You get sepsis and you are in big, big trouble. On top of this it is a carcinogen, and quite a powerful one at that.

And I know how you feel about the placebo effect, you have repeated it a million times.

The never ending repetition. CCSVI Locator, Facebook, those two don't suffer from a Leon and a Scorpion carrying out their civic duty, repeating the same idea a dozen times a day. Why us? What have we done to deserve you? We just want to discuss CCSVI in the CCSVI forum and not enter a mind numbing un-discussion. The arguments against CCSVI are documented and what do we have neurologists for anyway? Can't you just talk in the General Forum, unless you have something new and interesting to say, a contribution to make? Or perhaps you could have a sticky in the CCSVI forum. A warning/scepticism thread where you get to warn everyone against CCSVI/point out the perceived weaknesses in the theory but keep the comments to that? It would attract lots of attention, you're so busy posting that it would stay at the top of the forum, newcomers will read it for sure but we'd avoid the repetition. How would that be?