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01-17-2012, 05:09 AM | #1 | ||
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Senior Member
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Placebo effects have ethical consequences for this forum.
The larger the placebo effects are the more careful we need to be when posting information that conflicts with the belief that other people have in the efficacy of their actions. Taking a wide definition of the words, even a post reporting some research can, itself (i.e. the act of communication), be considered either a placebo or a nocebo. By extension, I would argue, the forum itself acts partly as a placebo. I'm certainly not suggesting that people only post good news. Not least because the placebo effect is enhanced by credibility, which would be reduced if we followed such a road. Where do we draw the line? John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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01-17-2012, 02:56 PM | #2 | ||
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In Remembrance
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That's a good point John, but if the trial investigators have not leveled with them about the intensity of the placebo effect in the informed consent or if patients haven't educated themselves, who knows what would happen? That's why we are so against the way they do trials, especially sham surgery. And why we educate about the possibilities. it's deceit. But we could be influencing their results, altho I' m not sure in which direction.
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paula "Time is not neutral for those who have pd or for those who will get it." Last edited by paula_w; 01-17-2012 at 03:40 PM. Reason: accidentally put "It's deceit" in John's post so moved it |
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01-17-2012, 03:15 PM | #3 | ||
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Magnate
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not sure if john is referring to clinical trials vs. unproven alternative methods that may have improvement just based on placebo affect. if he is referring to the latter, then welcome to the internet and remember, if it sounds too good to be true it usually is.
for an interesting discussion of the failed clinical gene therapy trials, transplant studies and why phase1 results may have been so good. http://www.theparkinsonsgroup.com/CM...r=Park10_Part2 btw john, drawing conclusions from your handedness trial is imho useless as are most internet polls. you can't verify if anyone is telling the truth, even if they have pd or gendor and it's likely you aren't sampling a normal pd population distribution. |
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01-17-2012, 09:50 PM | #4 | ||
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Let me give some more details.
To set the scene, how should we react if a drug manufacturer sold pills labeled "100 mg levodopa" even though they knew they contained only 50 mg levodopa? I think most people would shout "Evil". The placebo effect can increase the effectiveness of a drug or create a theraputic effect where none was due. The scale of the effect depending, in part, on the level of belief in the effectiveness of the therapy. Now, how should we react if someone posted to this forum something which, although essentially correct, could be expected to reduce other people's belief in their therapy and, hence, its effectiveness? John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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01-18-2012, 09:42 AM | #5 | ||
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But how could this possibly be controlled, short of a “censor” monitoring the postings or members self-censoring what they post? I’m certain no one would want to curtail the free exchange of information and ideas that is the Internet.(I know you are not suggesting this) And even if Neurotalk did limit what could be posted in some way, there are so many other Web sources where the same type of information could be found. What about all the company issued press releases that proclaim they have discovered “a new breakthrough treatment for PD” , based on early results? There doesn’t seem to be a way to control the information, or sometimes misinformation from reaching PWP, and it probably can cause a type of placebo effect. We need to be reminded that reactions to treatments vary a great deal between patients. But I think the question that you posed is a great argument for why we need to develop new ways of testing drugs, and why the placebo-controlled studies may often fail. Although they try to equalize the experiences of control and experimental groups , to the extent of drilling holes in people’s heads (as in sham surgery), unlike lab rats, they can’ t control for all the physical, psychological and social influences on how human subjects respond to treatments. So the placebo effect creeps in and clouds the results anyway. |
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"Thanks for this!" says: | Conductor71 (01-18-2012), jeanb (01-18-2012) |
01-18-2012, 01:08 PM | #6 | ||
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Magnate
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i believe the problem is not with the phase2 trials with sham/placebo surgery but with the way the phase1 open label trials are run. maybe their results should be questioned, not phase2. there's speculation that results are so good in phase1 because participants are so hopeful and huge placebo affect and the main researcher is involved and might be a little biased.
bigger problem is they have to be better than a dbs, not easy. |
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01-18-2012, 01:24 PM | #7 | ||
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Magnate
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geez john, if people don't want their "placebo bubble" burst by a skeptical responder here then that's their problem, they shouldn't post here. that policy would take us back to medicine man days. and what if they were to convince someone to stop taking meds, resulting in serious consequences or the "harmless placebo treatment" wasn't so harmless and/or very expensive? just bite your tongue? |
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01-18-2012, 03:13 PM | #8 | ||
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In Remembrance
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it seems to me that there are enough variances among pwp that dividing in ways within us would tell us much more.
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paula "Time is not neutral for those who have pd or for those who will get it." |
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01-20-2012, 02:52 PM | #9 | ||
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Senior Member
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I think that PWP have to be individually strong enough to defend their placebos, because no matter what your placebo, there will be people who laugh at it or speak against it. And I think that lots of PWP have addictions or methods or tactics that are much more powerful than what we call placebo. I really do know people who could dance at a time when they could not walk, and that was neither pharma nor placebo. So we do post information that conflicts with other people's beliefs in the efficacy of their actions.... we do that in every field in life... but a belief in a particular remedy or tactic against PD will withstand any doubters if you yourself clearly experience it as making life better for you. But I do draw the line when someone says they know how to "cure Parkinson's". When the cure is found, this site will let you know, believe me. There will be major fireworks. In the meantime, bring me as many placebos as you can find. I'll bring the Jack Daniels. Last edited by Bob Dawson; 01-20-2012 at 03:16 PM. Reason: ambiguity |
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01-21-2012, 04:51 AM | #10 | ||
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Senior Member
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Soccertese writes: "noone expressing an honest opinion is stopping anyone from doing anything they want. it's called freedom of speech."
I support your right to free speech, but point out that being free to do something does not, in itself, mean one should do it. Also, not stopping someone from doing something is not the same as not affecting them: posts to the forum, while not stopping someone from using a placebo, may reduce the benefit they get from it. Bob Dawson writes: "And I think that lots of PWP have addictions or methods or tactics that are much more powerful than what we call placebo." I agree. For instance, things like dance IMO probably have true theraputic value. But that doesn't stop there being an additional placebo effect. Even medically supported drugs and procedures can have an additional placebo effect. For instance, the colour of a genuine pill can affect its efficacy [1]. And for Parkinson's: "The estimated magnitude of the placebo effect in DBS was equivalent to 39% of the magnitude of the effect of active-DBS." [2]. I don't see the placebo effect as a problem (except in the case of drug trials) but, rather, as a free, without side-effect resource. I don't see it as ever being a cure for PD, but I do see it as a way to reduce symptoms and, perhaps, if better understood, reduce the rate of progression. It's not a case of science or the placebo effect. It's a case of gaining a better scientific understanding of the placebo effect so as to get more benefit from it. [1] http://www.wired.com/medtech/drugs/m...urrentPage=all [2] http://www.ncbi.nlm.nih.gov/pubmed/15036165 John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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