I'm glad you bumped this up Rosebud; I finished reading it. We saw this in action during the GDNF trials. The researcher who pushed it the hardest and is still refuting the study results was ostracized by the Parkinson's community and PD organizations would not take a stand beyond a certain point. They would not talk to the author of Monkeys in the Middle either. It is likely their boards that prevent this. These are the orgs that are supposed to be rescuing us.

It we don't complain loudly, the status quo will reign. I noticed on the video of Dr. Mark Stacey that Pdf presented with the North Carolina pd assoc. that the doctor said at the end of his talk [Stacey is notable for being Muhammad Ali's neurologist for a time and for defining the gambling and other addictions from our drugs - he was also a pro-Amgen investigator] that researchers need patients to "give them the courage to find a cure." He didn't explain, but he was a different doctor than the one we sat across the table from in a three hour discussion about the halt two years ago. Others present included neurologists with reputations to protect. Which doesn't mean they aren't good doctors.

I did not come away convinced it should have been halted, but appreciated the opportunity. The battle continues in journals. albeit civilized. I 've said all this so many times but again - we learned so much from that situation.

Now one of them asks us to give them courage......There is a lot of money being spent on fine things that should be going to work for us. I would think a pd org would be the first to support the GDNF book......not a one did. I think i can see how a researcher may not be doing himself any good to come up with a cure,

I'll be interested to see if any if the PD orgs post monkey in the middle on their sites.

paula