THIS PLACEBO EFFECT IS TOTAL CRAP - THEY SHOULD BE ASHAMED

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

THIS PLACEBO EFFECT IS TOTAL CRAP - THEY SHOULD BE ASHAMED

Postby hargarah » Mon Aug 16, 2010 6:58 am

What are these learned "Neurologists" smoking? We are not talking about depression or anxiety or pain.

How can a "placebo" effect reconnect nerve signals? It is physically impossible! MS causes "physical" damage to nerves - not just sensory problems, but actual PHYSICAL MOTOR problems.

This psychosomatic crap coming from our learned critics is so stupid...are they really stooping down to this level!
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Postby erinc14 » Mon Aug 16, 2010 7:04 am

:!:
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Postby BooBear » Mon Aug 16, 2010 7:07 am

Amen!!!
Three veins angioplastied.  One renewed life.  
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Postby PCakes » Mon Aug 16, 2010 7:31 am

for this 'desperate' ms population .. shouldn't any new treatment have returned at least similar placebic results? have any new drug therapies in the past had such an impact? if not, why?
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Postby TMrox » Mon Aug 16, 2010 7:44 am

hargarah wrote:What are these learned "Neurologists" smoking?


I hope that nothing, my docs have told me that smoking if bad for health :D

The progress that some of us have experienced after the angio is almost as a miracle. Could not describe it in better terms.

The fact that symptoms return after re-stenosis might suggest that our improvement is not down to placebo. There is something more substantial going on...Just my humble opinion.

Rox
Last edited by TMrox on Mon Aug 16, 2010 7:59 am, edited 1 time in total.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby garyak » Mon Aug 16, 2010 7:53 am

PCakes wrote:for this 'desperate' ms population .. shouldn't any new treatment have returned at least similar placebic results? have any new drug therapies in the past had such an impact? if not, why?



I've been saying this all along - they are grasping at straws trying to justify something they refuse to acknowledge or attempt to understand.
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Postby PCakes » Mon Aug 16, 2010 8:15 am

garyak wrote:I've been saying this all along - they are grasping at straws trying to justify something they refuse to acknowledge or attempt to understand.


agree!

..in time 'their' voices will waft.. and as is the nature, the rest will join in as if always on board. I dream of this future.. :) for now i hold to my theory that 'they' recognize the reality of an altered course, the sunami on this horizon, and fear for Health Care's ability to weather the storm.
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Postby 1eye » Mon Aug 16, 2010 8:21 am

To be fair I did meet one woman who was sort of a miracle case who said Tysabri was the way to go. She came to a meeting of MSLiberation.ca. We didn't see her again but she told a similar kind of "miracle story". I don't know about Tysabri myself. Keeping T Cells out of the compartment might be good, but I guess JCV is pretty endemic, and I have had enough exposure to horses that I would worry. I guess if you get it now they will flush your blood and I guess a few transfusions is always a good thing, but maybe it matters whose blood you get (high iron?).
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Postby concerned » Mon Aug 16, 2010 10:21 am

From Scientific American Mind:

Key Concepts
In recent decades reports have confirmed the efficacy of various sham treatments in nearly all areas of medicine. Placebos have helped alleviate pain, depression, anxiety, Parkinson’s disease, inflammatory disorders and even cancer. Placebo effects can arise not only from a conscious belief in a drug but also from subconscious associations between recovery and the experience of being treated—from the pinch of a shot to a doctor’s white coat. Such subliminal conditioning can control bodily processes of which we are unaware, such as immune responses and the release of hormones. Researchers have decoded some of the biology of placebo responses, demonstrating that they stem from active processes in the brain.
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Postby PCakes » Mon Aug 16, 2010 10:32 am

concerned wrote:From Scientific American Mind:

Key Concepts
In recent decades reports have confirmed the efficacy of various sham treatments in nearly all areas of medicine. Placebos have helped alleviate pain, depression, anxiety, Parkinson’s disease, inflammatory disorders and even cancer. Placebo effects can arise not only from a conscious belief in a drug but also from subconscious associations between recovery and the experience of being treated—from the pinch of a shot to a doctor’s white coat. Such subliminal conditioning can control bodily processes of which we are unaware, such as immune responses and the release of hormones. Researchers have decoded some of the biology of placebo responses, demonstrating that they stem from active processes in the brain.


yes, i understand the theory..but show another real example of placebo such as the ccsvi effect.. hundreds of treated.. sharing their successes and failures of varying degree, including those with initial success followed by regression followed by confirmation of return to previous state as cause of same regression. Not.. one person here or one person there or journalistic opinion. Proof.
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Postby concerned » Mon Aug 16, 2010 10:41 am

http://www.youtube.com/watch?v=fIROznYl ... re=related

This guy seems to have some success.
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Postby tazbo » Mon Aug 16, 2010 11:25 am

Dr Freedman said in an interview that he sees people get 50% better when he mentions to the person that they will be getting a new drug...(paraphrased)...and this is why he knows CCSVI is not real.
I'm smiling nervously as I get closer to my Dr appt. for intervention.
Nice to see the same folks helping as they feel inspired...;-)
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Postby hargarah » Mon Aug 16, 2010 11:43 am

I am so glad you mentioned that name: Dr. Freedman.

This self-indulging prick is the biggest goof in the world. He cares only about his own opinion and has screwed up countless patients, both emotionally and with treatment.

Little do you know how many people have verbally told this piece of %$#@ to go %$#% himself. Yes - I know people that have.

Don't strain your eardrums listening to one piece of garbage that comes out of this %#%hole's mouth. He is not a man and should not be treating patients.

P.S. For all of you that think that this is not appropriate for this site, I totally disagree. This is free speech and an EXTREMELY IMPORTANT WARNING to new M.S. patients. Don't be hurt or feel helpless after Dr. Freedman talks to you. He will probably try to convince you to join one of his studies and be a "guinea pig", as he openly told me the day I was diagnosed with M.S. It turns out this study fell to pieces as liver enzyme levels went through the roof! Thank-God I didn't listen to him and went on an actual effective treatment.
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Postby bluesky63 » Mon Aug 16, 2010 12:25 pm

I would not discount the placebo effect. But I posted this in another thread: to me, the issue is not whether or not the placebo effect exists. The issue with placebo and CCSVI is *why* there is so much focus on placebo with CCSVI when I don't remember anyone focusing so much on placebo in any other MS treatments, surgeries, drugs, interventions, etc. in the years I have been getting newsletters and press releases and media updates about MS.

Take Dr. Freedman and his stem cell study -- who wrote about placebo effect there?

I actually am all for placebo effect if it could make a difference! I am all for anything that could make a difference with this disease!

But I think we should apply the same standards to all the treatments and drugs, and if we're putting CCSVI and angioplasty under such a microscope, then we should have the same standard for Freedman's stem cell study, for the interferon treatments, for Tysabri, fingolimod, etc.

I have not seen such a smear campaign with the other treatments and research as I have seen with CCSVI either.

Having said that, I absolutely believe that CCSVI *surpasses* placebo effect. Vastly surpasses placebo effect. But I would not just dismiss it out of hand with *any* MS intervention.

So that's my piece. :-)
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Re: THIS PLACEBO EFFECT IS TOTAL CRAP - THEY SHOULD BE ASHAM

Postby fogdweller » Mon Aug 16, 2010 12:50 pm

hargarah wrote:What are these learned "Neurologists" smoking? We are not talking about depression or anxiety or pain.

How can a "placebo" effect reconnect nerve signals? It is physically impossible! MS causes "physical" damage to nerves - not just sensory problems, but actual PHYSICAL MOTOR problems.

This psychosomatic crap coming from our learned critics is so stupid...are they really stooping down to this level!


The placebo effect seems to be much more complex than merely pycosomatic. It may be largely that, but seeming amazing things can happen puurely by placebo. And lets not forget that the brain/nervous system is a very complex system...if certain thing stop working because the nerves that perform that function are injurted or dead, sometimes other parts of the system could pick up the function. We have to rule that out to convince the scientific/medical world.
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