Montel finally responds!

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

Postby BooBear » Thu May 20, 2010 12:45 pm

Thus the "placebo effect"- someone improving because they think that they should or believe that they have had something that will make them better, though there has been no introduction of anything to warrant that response.

Most improvements that can be judged as placebo, though, are subjective. Fine- believe that you are less tired, less foggy, overall feeling better. That's subjective.

But gaining movement over limbs that weren't working before is one hell of a placebo effect. I just don't buy it.

If we could all get THAT better by believing our way into it, we would!
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montel finally posted

Postby blossom » Thu May 20, 2010 12:58 pm

it seems to me that the ones are that holding us up from getting tested and treated are the ones that are haveing one hell of a placebo effect. they weren't happy just playing GOD they have placeboed themselves to the point they actually think they are GOD! shamey face on them. whoever-whatever- if the shoe fits wear it.
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Postby Cece » Thu May 20, 2010 1:36 pm

My understanding is that the usual DMDs are tested against placebo and measured in terms of relapses and lesions found on MRIs. Placebo reduces relapses and lesions by 20%...those are objective real things!

People with rr ms, like me, do go through waxes and wanes...there are times when I gain strength and, if I'd just had venoplasty done, I'd attribute it to that when it could be nothing more than the usual cycle of better, worse, better, worse.

Now if you ask me what I believe, I believe there are too many reports of people getting tested for CCSVI and malformations being present and improvements once they're fixed for it to be anything but the real deal...plus ccsvi theory is the best explanation I've ever read for my lifelong symptoms...I also accept that doctors and insurance companies need it to be proven scientifically. And we've done our part: we've gotten them working on it. Just wish it were faster. :)
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Montel finally responds

Postby Drury » Thu May 20, 2010 7:10 pm

mshusband, would it be possible to give me some information on MS after trauma accident to neck and spine?
Thanks
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Postby BooBear » Fri May 21, 2010 4:08 am

Cece wrote:Now if you ask me what I believe, I believe there are too many reports of people getting tested for CCSVI and malformations being present and improvements once they're fixed for it to be anything but the real deal...plus ccsvi theory is the best explanation I've ever read for my lifelong symptoms...I also accept that doctors and insurance companies need it to be proven scientifically. And we've done our part: we've gotten them working on it. Just wish it were faster. :)


Amen. I don't disagree with you CeCe. But I will say that I am disturbed- no, I am angry- at the misinformation that has been spread about CCSVI and the Liberation treatment. I have personally heard "two deaths" from my neuro and others on this board have heard the same from their neuro. We have heard Dr. Freedman's input. I am fascinated that those that demand more research are associated with those that claim CCSVI will be discredited in a year on that research.

Research that is objective can only help our cause. We all wish it was faster, but the noise from the opposition is slowing things down.
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Postby scorpion » Fri May 21, 2010 4:20 am

Boobear I am confused why you and others paint CCSVI as "THE OPPOSITION VS. US". I am sure everyone with MS wants research into CCSVI to continue but some of us are just not convinced the getting "liberated" actually improves the symptoms of MS. That is all. I believed that much of the acrimony on this board comes from a few members who are trying to divide us for whatever reason. Them vs. us? That is not true. We are all effected by MS one way or another.
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Postby BooBear » Fri May 21, 2010 4:31 am

Scorpion, it's simple, really.

First, I have struggled with MS since my dx in 2004, though I believe some of my earlier, more vague symptoms indicate the presence of the disease prior to that time. I have done all of the traditional treatments. I even participated in clinical trials- for the record, signing yourself up to be a gineau pig for the benefit of not only your disease, but for the community.

I have no problem with those that want more proof on CCSVI. So, frankly, do I (because the more proof we get, the more accessible the treatment will become). In fact, I am a strong believer and advocate of critical thought. I scrutinize everything- including CCSVI. I read the research papers, the posts from the Liberated users, watched the videos of the before and after AND independently researched vascular disorders, effects of iron on the brain and possible links between vascular and neurological disorders.

That is why it upsets me when people misrepresent the findings.

How can anyone, such as youself Scorpion, decide what is right for them if they cannot gain access to the correct information? How can you trust your neuros to be your advocate if they provide you with incorrect information on this treatment? Should it be acceptable that we have to hide the names of doctors willing to perform this procedure for fear that they will be shut down if their names were known?

I do not represent anyone but myself with my posts, Scorpion, though I would wager that many on this board agree with me (because they have also done the research and faced the same obstacles). If I come across as "them versus us" it is only because, in my opinion right now, it IS "them vs us". Believe me, I wish it wasn't so.
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Postby AMcG » Fri May 21, 2010 5:16 am

A simple observation about placebos.

This effect (if present) is based on a subject's expectations. So how can it explain results which vastly exceed a subject's expectations? How can it explain entirely unexpected results?

I can attest to both these outcomes in my own experience. I dare say so can many other people who have been 'liberated.'

One last thing. What about people who experienced no improvement? They must have had hopes and expectations. Why no effect?
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Postby BooBear » Fri May 21, 2010 8:15 am

AMcG wrote:A simple observation about placebos.

This effect (if present) is based on a subject's expectations. So how can it explain results which vastly exceed a subject's expectations? How can it explain entirely unexpected results?

I can attest to both these outcomes in my own experience. I dare say so can many other people who have been 'liberated.'

One last thing. What about people who experienced no improvement? They must have had hopes and expectations. Why no effect?


A very keen observation, AMcG.
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Postby PCakes » Fri May 21, 2010 8:20 am

I have shared all 'before and after' videos available with a physiotherapist in my family. In all cases changes were noted that only a trained eye would recognize. These changes inspired this person to turn up the volume at work. 'Work' being a local hospital.. doctors, I.R's..etc etc
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Postby mshusband » Fri May 21, 2010 8:28 am

Since I'm relatively new to the whole MS "thing" ... here are my thoughts.

Lyon referenced this Amispro thing ... so I went back and did some reading. A "miracle" drug made by some company from some type of goat something or other?

If you didn't see from a mile away that was most likely a hoax ... I mean ... come on. Not to knock anyone who tried it or whatever, but ...



But to compare that to CCSVI (an actual CONDITION of the body) ... and what HARM can it do to have good blood flow through veins that drain the central nervous system? When WE KNOW (for a fact) that MS is the result of deoxygenated blood/iron causing the immune system to attack the body in the central nervous system?


So here is what I'm thinking ... I just wish they'd let me (maybe they will) ...

My wife has MS ... no doubt about it.
I DO NOT (ABSOLUTELY no doubt about that either).


Why don't we compare her jugular/azygos flow and her signs that point to her having CCSVI ... to my jugular/azygos flow at the time she goes in for testing.

We're both marathon runners ... we're both in good shape (I'd say great - but with grad school and full time work I don't have as much time to dedicate to it as I did). She is a darn good swimmer, I work out with weights.

I see no difference in us athletically aside from ... CCSVI?

When we work out, she doesn't sweat at all ... I sweat like crazy.

At night her head gets hot as can be if she's under a sheet ... I'm cool as a cucumber under a down comforter.

Her hands/feet are purple and cold. Mine are fleshy colored and warm.

If these go away when her veins are opened up ... then I think that tells you something ... correcting CCSVI can't be bad.

Whether it stops her MS ... I don't know yet ... but even clearing up those things ... CAN'T BE BAD. You know all those hot nights have to cook the brain somehow ...

What other difference could there be in two people who do the same activities and yet see completely different results (i.e. the sweatting, the color of extremeties, the temperature)? Riddle me that ... and then we'll talk again after her liberation (only a few weeks away) ... and we'll see if these things apply.
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Postby Cece » Fri May 21, 2010 10:24 am

mshusband wrote:Riddle me that ... and then we'll talk again after her liberation (only a few weeks away) ... and we'll see if these things apply.

Is she scheduled for it, then? She has my best wishes!

BooBear, up in DrS's thread, someone used the term FUD and I thought it describes it really well:
wikipedia wrote:Fear, uncertainty, and doubt (FUD) is a tactic of rhetoric and fallacy used in sales, marketing, public relations,[1][2] politics and propaganda. FUD is generally a strategic attempt to influence public perception by disseminating negative and dubious/false information designed to undermine the credibility of their beliefs.

also from wikipedia wrote:To dispel FUD, the easiest way is to ask for details and then provide well researched, hard facts which disproves the details.
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Postby BooBear » Fri May 21, 2010 10:42 am

I like that, CeCe, thanks for sharing it.

I am all for a different form of FUD: facts, understanding and dissemination. I think once we get (and continue to confirm, confirm, confirm) the facts, we all get a better understanding (including the general medical industry, insurance companies, etc.) and need to take ownership to disseminate the information to our communities.

The only reason I found this board was due to researching CCSVI. And how did I hear about CCSVI? A fluke. I was on YouTube and found one of Dr. Z's interviews. I ran to my husband and made him watch. I could not sleep that night. That was in January this year- I researched the heck out of it since. I can't wait to be liberated so I can share my story, too.
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Re: montel finally posted

Postby L » Fri May 21, 2010 12:16 pm

blossom wrote:it seems to me that the ones are that holding us up from getting tested and treated are the ones that are haveing one hell of a placebo effect. they weren't happy just playing GOD they have placeboed themselves to the point they actually think they are GOD! shamey face on them. whoever-whatever- if the shoe fits wear it.


Well said!
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Postby whyRwehere » Fri May 21, 2010 12:53 pm

I would like to say, especially to Scorpion, that I agree with BooBear (just wish they had a less silly user name!). We just want everybody to make up their own mind and not be told by their doctors to "forget it, MS is a complicated disease and you wouldn't understand these things, the treatment wouldn't work, it's just a hoax."
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