You're right Cure-o
I posted a thread some time ago called how we get fooled on this topic but this resource http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum
The double-blind in danger: untoward consequences of informed consent.
Brownell KD, Stunkard AJ.
Patients and physicians correctly identified medication assignments in 70% of the cases in a double-blind trial of an appetite suppressant. The breach of the double-blind design may have had therapeutic consequences; correct identification was associated with favorable outcome. These findings suggest that requirements for describing the side effects of medications to patients before they give informed consent may help them guess which medication they receive and thus may influence the integrity of double-blind studies and the results of controLled trials.
It is a mistake IMHO to overvalue the meaning of a positive trial. It is still true after the trial that the drug may or may not help YOU, and given the way double blind trials are not so blind, every drug trialled probably has a positive impact from that expectation. And it may be true that the largest influence on the trialled drug then will come from the "pretrial expectation" that can be generated via research "leaks". One can see the effect of this when they read a post that says "I am trying desperately to get into the trial of (x)". How can anyone want, in an unbiased way, a drug that is not trialled yet? it is completely impossible for there to be any objective information out on it at that point. Any and all information is coming from commercially interested parties. That person has been grossly influenced somehow and has a huge positive expectation.
yet someoen could fairly say to me well you are taking antibiotics for MS you have this same expectation. Yes I sure do. And any result I have will be considered anecdotal because of that. But imagine anonymous poster above gets in trial "X" and is told that she can expect certain side effects and she, luckily enough, experiences them. Is her data objective? What does she report to her researcher? Does she gush to her evaluating researcher about how well she is doing? Is the researcher influenced by this? Of course!
Is my personal trial REALLY that different? Think about it: maybe not. If 70% of participants know they are getting thing "X" and also have positive expectation then it may be true that a majority of the effect is actually no better than anecdotal as well
I am waiting for research to finally answer the question as to what specifically causes MS. Only then will new drugs be more effectively targeted and we'll see trials with much higher effectiveness numbers.
That'd be good!
In the end every patient must try a given drug in a very unblinded trial on themselves. If it helps you, you have your answer.