[johnt]

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

[paula_w]

Originally Posted by johnt

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

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.

[soccertese]

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.

[johnt]

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

[LindaH]

Originally Posted by johnt

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

John, if I’m understanding correctly, you’re concerned about the effect of positive or negative NeuroTalk postings about the efficacy of both approved treatments and those in clinical trials. I agree that reading about how others experienced these treatments could affect one’s own response to the treatment, by raising or lowering expectations.

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.

[soccertese]

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.

[soccertese]

Originally Posted by johnt

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

the last th

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?

[paula_w]

it seems to me that there are enough variances among pwp that dividing in ways within us would tell us much more.

[johnt]

Linda writes: "John, if I’m understanding correctly, you’re concerned about the effect of positive or negative NeuroTalk postings about the efficacy of both approved treatments and those in clinical trials."

I'm certainly concerned about the impact of the placebo effect on those issues, but others as well: supplements, diets, exercise regimes and more abstract things. For instance, I think reading a positive post about, say, a research breakthrough can itself be considered a placebo. Conversely, reading a negative one about, say, a clinical trial failing acts as a nocebo.

Soccertese writes: "if people don't want their "placebo bubble" burst by a skeptical responder here then that's their problem, they shouldn't post here." I really don't think it is as simple as that. We are a community where, I hope, the well being of the indidual matters. Sometimes a component of that well being will be due to the placebo effect. There are times when this needs to be pointed out. For instance, where the "therapy" is dangerous. But, there are other times when it is not necessary. For instance, where the "therapy" is safe, cheap and doesn't preclude more effective treatments.

I think this forum does a good job: most posts are positive; enough are negative to maintain credibility; new advances are reported at a rate at least as fast as old ones go stale.

I don't want censorship. I do want people to understand the power of the placebo effect on PwP and to take this into account in their postings.

John

[soccertese]

john,
me thinks you worry too much. pd'ers sincerely describing alt treatments here i would assume must know they are going to get some discussion and if the benefit was mostly due to placebo, the poster would get feedback from other sources besides this board, in other words, the placebo affect can't last forever and i've never seen any confirmation of a long lasting placebo affect in pd, which is not a mental disease.

basically, for a new poster that has not established themselves and i have no idea f they are just marketing something, i'm going to give an honest opinion.