Quote:
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
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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.