CCSVI Neutral or Critical Perspectives

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

placebo effect a concern with MS treatment

Postby scorpion » Fri Aug 06, 2010 9:48 am

[removed]This is an article just printed today.

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Postby BooBear » Fri Aug 06, 2010 9:55 am

It's interesting, Scorpion. I am not sure, though, that I can relate a placebo effect directly to the Liberation Treatment.

Dopamine is powerful, and releasing a lot of it into our bodies is wonderful. But it is not so powerful, I believe, that it can restore physical functions to the degree that we see on some of the testimonial videos.

I watched one "before and after" video where a woman could not track her finger properly without her eyes misaligning. After the procedure, she could track fine. This one stuck with me- I had an episode that affected me this way and I can't imagine someone faking it or wishing it away.

I do support the clinical trials advocated in the article, but I would like to see more of them.
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Postby scorpion » Fri Aug 06, 2010 9:58 am

I support the clincal trials as well. I am just very skeptical when I see someof these Youtube videos.
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Postby concerned » Fri Aug 06, 2010 10:13 am

BooBear wrote:I watched one "before and after" video where a woman could not track her finger properly without her eyes misaligning. After the procedure, she could track fine. This one stuck with me- I had an episode that affected me this way and I can't imagine someone faking it or wishing it away.


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

http://www.youtube.com/watch?v=2N2WP9k2 ... re=related

These videos were posted on medical myths. There are plenty more where that came from (just look at the suggestions).
If it's not "meaning response", then what exactly is the vascular technique used by the faith healer?
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Postby LivabirdsHubbie » Fri Aug 06, 2010 10:28 am

Maybe if all these Neuros spent as much time looking into the theory rather than just disproving it, we might get somewhere.
Should they not be looking at the possibilities of this...
Do they spend that much time disproving their drugs they freely give to MS patients... or do they spend the time trying to prove they are effective.
Don't get me wrong there are some Neuros that are open minded and actually want to look into this, i have been in contact with one such person. His focus is on what might be good for the patient and not the pocket book.

Just my opinion for what it is worth...
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Postby Cece » Fri Aug 06, 2010 10:35 am

I agree that the placebo effect is real but I think we need the research to be done. As I see it now, first the docs get proficient at the procedure, then we get the randomized controlled trials specifically to address how the CCSVI procedure performs as compared to placebo, then we know.

Now it is my belief that the evidence as people are reporting it is simply overwhelming. Nearly every MSer who goes to a doctor to look into this finds that they have stenosed jugulars or azygous. These stenoses show up on the imaging, they're black-and-white.
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Postby ozarkcanoer » Fri Aug 06, 2010 10:58 am

I support clinical trials. I support well designed clinical trials. Right now the only procedure related double blinded clinical trials being conducted are at BNAC with their 30 person study. However there is some question about whether the procedure itself needs to be investigated and perfected before useful clinical trials can be conducted. Performing the ballooning and/or stenting procedures varies from IR to IR as we discovered from Dr Sclafani's symposium. So what comes first : the double blinded clinical trials trying to prove the relationship between MS and CCSVI or studies trying to investigate the safety and efficacy of the procedures. I think we will answer many of these questions by letting IRs do what they do best : perform procedures on willing patients.

As for placebo... give me some placebo please !!!! Right now all I have is a great deal of anger at shooting myself with Copaxone daily with NO symptom relief and receiving nice periodic sweet little reminders from Shared Solutions about maintaining my "commitment to therapy". Apparantly therapy for me is paying Teva tens of thousands of dollars so I can shoot up every day with NO placebo. Sorry for the rant.

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Postby James78 » Fri Aug 06, 2010 11:11 am

And maybe I am too new to be commenting on all this, but how come I dont see youtube videos reporting placebo affects after taking the latest 'wonderdrugs' created with loving care by our pharma companies with the neuros giving them theit thumbs up and telling us 'these will make you feel better'?.....Nothing it seems, not diet, any drugs, bed therapy has created anywhere near a placebo affect in the MS community before....

More to the point, surely a placebo should have greater affect when the powers that be, our medical betters are telling you this is what you need.....So how come placebo affects are only felt by some dodgy unproven procedure and not by ridiculously expensive drugs sanctioned by our governments and doctors?

As for people getting worse, on the humanside, this is heartbreaking, but from a scientific viewpoint this is surely of interest too.....We are playing with peoples veins and they are getting better or worse....For me, CCSVI will only be proved a sham if hundred of people report no better or worse/ symptoms with the same steady progression or relapse rate....i.e.....it has no affect whatsoever

Rant over....
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Postby ikulo » Fri Aug 06, 2010 11:15 am

concerned wrote:
BooBear wrote:I watched one "before and after" video where a woman could not track her finger properly without her eyes misaligning. After the procedure, she could track fine. This one stuck with me- I had an episode that affected me this way and I can't imagine someone faking it or wishing it away.


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

http://www.youtube.com/watch?v=2N2WP9k2 ... re=related

These videos were posted on medical myths. There are plenty more where that came from (just look at the suggestions).
If it's not "meaning response", then what exactly is the vascular technique used by the faith healer?


I don't have any first hand knowledge if these particular people actually had MS, but I know from personal experience that generally these healing/faith shows are all fake. Both the "healer" and the "sick" are on the same team. It's more of a performance. You might as well link to an actual movie.

Don't base your understanding of the placebo effect on tv evangelists. Placebo is real, of course, and deserves to be discussed thoroughly and intelligently. But these videos do not further our understanding.
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Postby vivavie » Fri Aug 06, 2010 12:04 pm

How can something be a placebo effect if the improvements are something you did not expect or thought it could be related to MS. Saliva and bowel regularity (every day vs 7-10days)!?!? Less than 24hrs post procedure and lasted more than 6 weeks. Another strange one, I could smell myself. I had an odor! (the problem was not my nose because I could smell others)

I did not have a WOW liberation and my improvements are gone now but I do know that good blood flow makes a difference! As placebo effect I would have expected something a bit more fun than that!!!
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Postby cheerleader » Fri Aug 06, 2010 12:44 pm

Hi Scorp--
That article is correct---and we've discussed this many times. Placebo effect is very, very real. It can make cancerous tumors disappear. That's why doctors like Dr. Hubbard and Dr. Haacke are actually measuring venous undershoot and oxygenation levels in CCSVI patients before and after angioplasty. There is a marked difference in both of these as measured by fMRI BOLD technology. Papers coming.

Jeff's talked about this with Dr. Dake. He had severe sleep apnea prior to procedure, which has remitted. He sleeps soundly now. Also gone are spasms, urgent bladder, heat intolerance and fatigue that he couldn't overcome. Certainly, placebo may be at play...but Dr. Dake thought these improvements were more linked to venous insufficiency, since we see many of these same symptoms in people who have low O2 due to altitude sickness or carbon monoxide poisoning. And Jeff didn't know what to expect after angio, since he was the first reporting. When he was able to bike and hike in 100 deg. heat again-- and came home sweating, stinking and smiling--it was unexpected, to say the least.

The CCSVI Alliance will be supporting clinical trials, and hosting more symposiums, like the recent one at SUNY Downstate. The problem is that the neurological community is coming out- guns blazing- right now. They've got prestigious journals, and a terrific connection to the press, and lots of respect---and the few vascular docs that are working on this are trying to keep up, but they are not nearly as influential.

Frankly, the youtube videos scare me....anyone can post anything, and there's no verification. I'm still waiting on the papers, but the honest truth is---if you know you have CCSVI, it really doesn't matter what anyone else thinks or puts up on youtube.

...and the kid on that 17 min. youtube video talking about his stem cell treatment and the CCSVI scam could just as easily be having a terrific placebo affect from his medical procedure.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Fri Aug 06, 2010 1:47 pm

cheerleader wrote:Hi Scorp--
That article is correct---and we've discussed this many times. Placebo effect is very, very real. It can make cancerous tumors disappear. That's why doctors like Dr. Hubbard and Dr. Haacke are actually measuring venous overshoot and oxygenation levels in CCSVI patients before and after angioplasty. There is a marked difference in both of these as measured by fMRI. Papers coming.

Jeff's talked about this with Dr. Dake. He had severe sleep apnea prior to procedure, which has remitted. He sleeps soundly now. Also gone are spasms, urgent bladder, heat intolerance and fatigue that he couldn't overcome. Certainly, placebo may be at play...but Dr. Dake thought these improvements were more linked to venous insufficiency, since we see many of these same symptoms in people who have low O2 due to altitude sickness or carbon monoxide poisoning. And Jeff didn't know what to expect after angio, since he was the first reporting. When he was able to bike and hike in 100 deg. heat again-- and came home sweating, stinking and smiling--it was unexpected, to say the least.

The CCSVI Alliance will be supporting clinical trials, and hosting more symposiums, like the recent one at SUNY Downstate. The problem is that the neurological community is coming out- guns blazing- right now. They've got prestigious journals, and a terrific connection to the press, and lots of respect---and the few vascular docs that are working on this are trying to keep up, but they are not nearly as influential.

Frankly, the youtube videos scare me....anyone can post anything, and there's no verification. I'm still waiting on the papers, but the honest truth is---if you know you have CCSVI, it really doesn't matter what anyone else thinks or puts up on youtube.

...and the kid on that 17 min. youtube video talking about his stem cell treatment and the CCSVI scam could just as easily be having a terrific placebo affect from his medical procedure.
cheer



Cheer these are the kind of statements that I just do not understand. For the life of me I can not figure out why neurologists who treat 1000's of different diseases care about CCSVI being proven.or disproven As a comparison there are 1.3 million people who suffer a brain injury each year as opposed to the 12,000 people who annually are diagnosed with ms. More than 200, 000 people per year are diagnosed with brain tumors. There are 800,000 people living in the U.S. who have cerebral palsy as compared to 250,000-350,000 with MS. There are 5.3 million people in the U.S. who have alzheimers. 50,00 people per year are diagnosed with Parkinson's compared to 12,00 with MS. Some neurologists may not believe in the science behind CCSVI but to say they have come out with guns smoking because they are in some way threatened by CCSVI just does not make sense to me.

Another point that keeps being brought up is the supposed neurologist press connection. How many neruologists actually have the time or an interest in talking to someone from the press? I mean I am sure there are some rerlationships that have that developed between ceratin doctors and certain people from the press but I dont understand what you mean by a terrific connection.
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Postby scorpion » Fri Aug 06, 2010 1:54 pm

L wrote:[removed]Does anyone think more trials investigating CCSVI might be a good idea? I wish they'd hurry up because we sound like a stuck record.


I mean I guess I agree with some of the stuff he says in the video but I really did not like the way he referred to people as psychotic idiots, desperate morons, etc.

You know L I think we have all have found an area of agreement. I do not believe there is one person on this board who does not want to see CCSVI be tested in a clinical trial. Maybe we can all build on that?
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Postby BooBear » Fri Aug 06, 2010 2:00 pm

@ Cheer-

Cheer, I agree that the placebo effect exists. But I have trouble associating physical restoration to placebo.

Whether we really, really, really want this to work won't matter in getting damaged nerves to suddenly work so that we can walk again. Or allow our eyes to track again, or any of the benefits that we have seen. More compelling are the changes that no one is expecting, such as bowel and sensory improvements, that are getting reported. I struggle with someone obtaining an effect that they knew nothing about.

That said, I agree with you that we need to closely document and ensure that we do gather the right information. The YouTube videos are created by people that want to show the world that this worked for them- can't blame them for that. It is extremely compelling testimony; the drugs certainly did not do that for them, as we know.

Finally, if this was all a big Dopamine rush, then I say give everyone with MS weekly dopamine injections instead of the CRABS and we should all be just fine. :)
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Postby L » Fri Aug 06, 2010 2:04 pm

scorpion wrote:I mean I guess I agree with some of the stuff he says in the video but I really did not like the way he referred to people as psychotic idiots, desperate morons, etc.


I'm sure he doesn't mean it, he's just getting a bit over excited.

You know L I think we have all have found an area of agreement. I do not believe there is one person on this board who does not want to see CCSVI be tested in a clinical trial. Maybe we can all build on that?


Indeed we have. But let's hope the results are positive because I don't think negative results will be accepted by 'us' unless they are published by the man himself. Until then the debate will continue it's cyclical path..
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