Quote:
Originally Posted by soccertese
conductor,
most phase2 pd clinical trials fail after stellar phase1 results. that's why i'm skeptical. why?
1. placebo affect. and the phase1 study certainly wasn't a blinded study. one patient secretly taking more meds or altering their med regime
could have easily skewed the results, these were mild/moderate pd'ers.
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Right, I get your skepticism, but my point is that because of these research deficits,we need more in situ or anecdotal evidence to refute or support the results. This would not supplant controls, obviously, but I think parallel observational studies or surveys may give PD research more heft. I think Nan is living proof that it is not just placebo. If you happened to have read her earlier posts, she will be the first to say that if she slacks, symptoms are back. I'm not sure if that is still the case.
Quote:
Originally Posted by soccertese
i've done research which required statistics to determine if the results of the treatment were sig. different from chance. there is so much variability day to day, hour to hour with pd i am skeptical of such a small study that has so many variables.
if you want to PM me i'll be glad to discuss this further but i believe i have every right to express my skepticism.
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I am agreeing with you here as well. There is too much variability and uncertainty in this; most everything is clinical observation. I take most of what is published with a grain of salt. How can you have any scientific control if you have no real scientific measure?
I guess, I am meaning "skeptical" in general. Why is that negativity automatically transferred to Nan's experiences? How can we just overlook or ignore people in the real world and their actual experiences? You mention that someone could take extra meds and skew results. This is no different from lack of control in ELLDOPA trials. Both then are flawed.
I see research in PD as one giant house of cards anyway. Whether it is six people, 500 trial participants, or a neighbor's friend, they all carry equal weight in my book. When they can show me results of a trial centering on taking Azilect daily for 8 years vs. Curcumin and at least one person on Azilect can match Ron Hutton's med decrease, then I'll be convinced that maybe we should only be using evidence based medicine as our treatment model. As it stands now we are overlooking many potential avenues of treatment and people suffer needlessly because of it (off label meds).
I am saying given the limitations in trial design with PD (placebo and lack of scientific measures)... In light of this, should we not look to what people share with us as their experience in real life as maybe something that might be considered essential in a new research model or paradigm?