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Old 01-29-2012, 02:04 AM
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Conductor71 Conductor71 is offline
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Join Date: Jul 2009
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Default Data Liberation...

Quote:
Originally Posted by boann View Post

And there are no hurdles to jump, like finding a biomarker, to be able to test symptomatic therapy – we've got that down. So if only because of that difference, finding a better symptomatic therapy could be achievable in a shorter term than neuroprotection.

And this singular focus on neuroprotection means that few resources are being directed towards a better symptomatic therapy.
I think we have all questioned why levodopa is so revered as our gold standard. While I agree it allows people to feel a little less compassion for us, and it may be hell, and yes, DBS is a non-lethal form of what was formerly prescribed as a "drug holiday", at least we have it. I thank my lucky stars while cursing my fate at the same time. I could not imagine enduring this without it.

However, I respectfully disagree that too much attention is given to neuroprotection. If you do a Pub Med search there are around equal number of hits for both "novel therapy" and "neuroprotection" (each yields around 3400 articles). The problem we face is that the vast majority of the possibilities are never pursued. Why is that? Well, I can't put a name to it other than to say the disease research community is a free for all or in more modern vernacular "a hot mess". It is beyond repair; it needs to be imploded and redesigned, and regulated or accountable. It doesn't necessarily have to be governmental but someone needs to be named the grand poobah. Someone like Sergey Brin might do nicely.

It is clear that for real progress, scientists must work together on a global level; meanwhile, we are still waiting on a "national" disease registry. Instead because we have primarily a profit driven system that fosters competitiveness and secretiveness, we do not share discoveries but rather hoard them; securing patents and then sitting on what should be freely available, if the motivation were truly humanitarian rather than financial. Add in the FDA's ridiculous expectation that every potential new treatment pass an archaic placebo trial showing efficacy, and we're doomed. This results in little more than generation of "me too" drugs and a pre-occupation with dopamine. Since no one is held accountable for anything, nothing changes.

I guess the way I see it is we treat each and every incurable, chronic and/or degenerative disease as if we were waging war. Scientists become our soldiers an form platoons on up the chain of command. In other words we need an open, collaborative environment where people work together toward a common goal. We have declared war on drugs, so why can we not have a war on PD?
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"Thanks for this!" says:
imark3000 (01-29-2012)