Dozens of ALS patients are testing treatments on their own without waiting on the slow pace of medical research.
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If 87 patients did not have any improvement by their own evaluation, I fail to see how an double-blind study of 84 patients is going to show any difference.
People with diseases deemed terminal should have the choice of participating in "uncontrolled" studies as well as "controlled" ones. Controlled studies have their own problems too eg. Vioxx for a glaring example. I drew the conclusion from that debacle the the "gold standard" is not so much of a gold standard anyway. The idea of "double-blind" studies is to "objectively" assess the effectiveness of a drug or other treatment by getting rid of "bias". This is an ideal. I have not yet seen a single instance of a true "ideal" situation, definitely not regarding elimination of "bias".
Look at the "race" issue. Civil rights laws were passed with the best of intentions. The only thing that was not accounted for was the length of time it would take for the population at large to change their attitudes. The reason for this was that the "end point" was and is being defined as "complete absence of bias".
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