I am becoming skeptical...

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

I am becoming skeptical...

Postby codefellow » Thu Jul 28, 2011 2:50 pm

Some questions I think are worth discussing (again):

1) If Zamboni is even close to right, why are his results so frigging difficult to duplicate by ANYONE, even other vascular specialists? Is it because he designed his criteria FROM the patients he had, instead of settling on a criteria and then seeing if the patients fit?

2) As I recall, the Plebotomy collars demonstrated that MS patients had much slower return of blood flow to the rest of the body when they sat up from a prone position than healthy controls...finally objective evidence that is not so invasive or operator-dependent...and yet it disappears from the public eye like the UFO sighting from the space shuttle...what is that about?

3) If Zamboni is completely wrong, is the placebo effect so strong it can actually get people out of wheelchairs in some cases and improve quality of life? If so, how is it that no DMD has ever been able to duplicate that effect? Is it because neurologists tell patients the DMD's will NEVER do that? Or is Zamboni the greatest hypnotist of all time?
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Postby 1eye » Thu Jul 28, 2011 5:04 pm

I know I will never convince you either way if you've already decided - all the guff I've heard about 100%s. It was not big enough to conclude anything, either way, about the probability. For a cohort that size, it could be as true as the sunrise, or it could be a coincidence.

I know nothing about those collars but I'm sure you could find a conspiracy of some kind if you wanted it badly enough.

As for your third question I think Dr. Zamboni's detractors, who never call him a doctor in public, are far more malleable and easily affected by these things than the average Joe. How hot they get under the collar, when it looks like somebody is managing to make a living by helping people with CCSVI! They can't stop talking about him, even for a second! It's sad, actually. If they didn't do this, maybe someone else would get mentioned once in a while. They act as if he did it all himself between golf games.
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Postby codefellow » Thu Jul 28, 2011 5:51 pm

1eye wrote:I know I will never convince you either way if you've already decided - all the guff I've heard about 100%s. It was not big enough to conclude anything, either way, about the probability. For a cohort that size, it could be as true as the sunrise, or it could be a coincidence.

I know nothing about those collars but I'm sure you could find a conspiracy of some kind if you wanted it badly enough.

As for your third question I think Dr. Zamboni's detractors, who never call him a doctor in public, are far more malleable and easily affected by these things than the average Joe. How hot they get under the collar, when it looks like somebody is managing to make a living by helping people with CCSVI! They can't stop talking about him, even for a second! It's sad, actually. If they didn't do this, maybe someone else would get mentioned once in a while. They act as if he did it all himself between golf games.



I consider myself to be on the fence, but leaning toward hope. I WANT CCSVI treatment to be something that will help my wife, but wanting does not make it so. You are right in that I should have called him "Dr." Zamboni. AFAIK, this is the first time a theory that has gained attention is one advanced by someone with an actual degree in medicine. This is what distinguishes it from bee venom et al.. It may or may not be right, but it is at least plausible. Also, wrong or right, anyone who has earned a degree in medicine deserves the respect of being called by that title. My bad.
:oops:

But you actually proved my point about the collars. Anyone else remember them except me and maybe Cece? Maybe I was the only one who got excited about them....I thought, here we go, finally, almost irrefutable objective evidence one way or another....and then nothing. Vanished into cyberspace like they never existed. Again I ask, what is up with that?
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Postby Cece » Thu Jul 28, 2011 6:06 pm

Plethysmography collars. Very exciting. It was mentioned at ISNVD this spring, by Dr. Zamboni and also a doctor from the UK if I recall correctly. I think it is a new thought as applied to CCSVI so there has not yet been time to design studies incorporating plethysmography.

Dr. Zamboni may be busy with the Brave Dreams study so I do not know if he is pursuing the plethysmography concept. I would like to know if someone is.
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Postby Lyon » Thu Jul 28, 2011 6:18 pm

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Postby Cece » Thu Jul 28, 2011 6:25 pm

In the other thread, you said that the field (of vascular science and/or CCSVI) may not exist...
Plethysmography may not exist...
Lyon, are you having an existential crisis? :D

btw you are not the most despised skeptic.
Nor is skepticism, in and of itself, a negative around here. We need all sides, but not without kindness or respect, imo.
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Postby Lyon » Thu Jul 28, 2011 6:44 pm

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Postby codefellow » Thu Jul 28, 2011 8:27 pm

Lyon wrote:Well then, who is the most despised skeptic? Don't worry, I won't blab. :twisted:


My impression is you and scorpion are tied.

:D

Personally, I think skeptics perform a valuable service here, even though some discussions can sometimes get a bit shrill. Everything in moderation (tip of the hat to jimmylegs)..
:)
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Postby codefellow » Thu Jul 28, 2011 8:33 pm

Lyon wrote:Contrary to popular opinion here at thisisms the placebo effect can last as long as someone remains convinced of the treatment, or even as little as being told they've had a treatment they strongly believe in and it not only is capable of letting people hop out of wheelchairs but also makes cancerous tumors disappear and all sorts of unimaginable things. That isn't to say that the improvements attributed to venoplasty IS due to placebo but that nothing has yet to happen that isn't within the realm of placebo.


Wow. Then what could happen in the realm of MS symptom improvement, that, in your opinion, WOULD be outside the realm of placebo?
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Postby 1eye » Thu Jul 28, 2011 9:03 pm

codefellow wrote:
Lyon wrote:Contrary to popular opinion here at thisisms the placebo effect can last as long as someone remains convinced of the treatment, or even as little as being told they've had a treatment they strongly believe in and it not only is capable of letting people hop out of wheelchairs but also makes cancerous tumors disappear and all sorts of unimaginable things. That isn't to say that the improvements attributed to venoplasty IS due to placebo but that nothing has yet to happen that isn't within the realm of placebo.


Wow. Then what could happen in the realm of MS symptom improvement, that, in your opinion, WOULD be outside the realm of placebo?


Perhaps the resurrection of Elvis? Seriously, the Cochrane review publish a meta-study on placebo studies more or less annually, which keeps saying the same thing: you can't use it to treat anything. So my question is, how can you use it to prove anything either? I think it is often misused and does not prove as much as it is reputed to.

I want it on my tombstone: "On placebo."
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'MS' is over - if you want it
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Postby 1eye » Thu Jul 28, 2011 9:11 pm

But you actually proved my point about the collars. Anyone else remember them except me and maybe Cece?

I don't remember the specifics but I remember them being mentioned a couple of months ago here, although this is the only place I've heard of them so I don't know if they really exist or not.


They sound pretty trivially simple if you know what a strain gauge is. To me this is a non-topic. Perhaps it is also to the users of that tool.
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Postby sou » Thu Jul 28, 2011 11:52 pm

Lyon,

everybody is free to take a cold, unbiased, without feelings MRI scanner and measure oxygenation throughout the CNS between controls and MS patients.

Tell me, what have they found a few years before Dr Zamboni's publication? Is this difference safe? What happens after correcting the non-existing CCSVI?

Does anybody think that this is part of a conspiracy?

Food for thought...
Last edited by sou on Fri Jul 29, 2011 3:35 am, edited 1 time in total.
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Postby civickiller » Fri Jul 29, 2011 2:58 am

sou wrote:Tell me, what have they found? Is this difference safe? What happens after correcting the non-existing CCSVI?

Food for thought...


they MAY find block veins. who knows whats safe, theres usually collateral veins bypassing the block. after angioplasty blood flow is restored. The patient seeing improvements maybe just placebo, why do some people feel more of an improvement than others if they feel any improvement at all?

i know Lyon can make a way better case than i can.

You have to look at both sides with an open mind. i believe ccsvi does exist but its improvements that people feel is another thing, maybe real maybe not but i also believe Upper Cervical Care and correcting it will fill the gaps in ccsvi improvements and restenosis
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Postby sou » Fri Jul 29, 2011 3:41 am

civickiller wrote:they MAY find block veins.


I am not talking bout veins. I am talking about perfusion/oxygenation. I rephrased it a bit so that I am more clear.

who knows whats safe


Is hypoxia safe? AFAIK, it is never safe for any tissue.

theres usually collateral veins bypassing the block. after angioplasty blood flow is restored. The patient seeing improvements maybe just placebo, why do some people feel more of an improvement than others if they feel any improvement at all?


I didn't speak for blockages but oxygenation. I don't care what the patients say. I want numbers: Is oxygenation improved, yes or no?

You have to look at both sides with an open mind.


No matter how open a mind might be, hypoxia is hypoxia and numbers are numbers.
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Postby codefellow » Fri Jul 29, 2011 5:37 am

1eye wrote:
But you actually proved my point about the collars. Anyone else remember them except me and maybe Cece?

I don't remember the specifics but I remember them being mentioned a couple of months ago here, although this is the only place I've heard of them so I don't know if they really exist or not.


They sound pretty trivially simple if you know what a strain gauge is. To me this is a non-topic. Perhaps it is also to the users of that tool.



I do not know what a strain gauge is. What is it, and why does it make the collars a non-topic?
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