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Old 04-14-2012, 04:49 AM
lindylanka lindylanka is offline
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Join Date: Sep 2006
Posts: 1,271
15 yr Member
lindylanka lindylanka is offline
Senior Member
 
Join Date: Sep 2006
Posts: 1,271
15 yr Member
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Paula,
I woke this morning with some of your questions, and a few more. Last night practically the last thing I did before bed was read Bob Dawsons post, and I had this vision of the karma that science is building up with the 88 million mice and the other creatures too, and how we are there, millions of us, and we have been saying come and take a harder look at us, we too are in your laboratory, but is anyone paying attention. It is not that the orgs and the researchers are not working hard, or even that their motivation is wrong. I sometimes feel they are just asking the wrong questions. Or looking through the wrong lens. Or something. Or that science itself is maybe incapable of looking at itself objectively anymore. How much is good science and how much is bad science? This isn't personal, it's not saying one group are not doing things right or pointing a finger. It is asking a real question, one that is appropriate for our times.

I am forever trying to get a grip on the idea of 'de novo' as a paradigm for trials. Yesterday we got news of yet another person diagnosed with PD and moved onto a DRD diagnosis, who has been moved back to a PD diagnosis as their condition worsened! Just from this one event, I have so many questions.
Because I suppose even the very best people do not always seem to know whether what they are seeing IS PD. So who are the people on the trials, how many of them do have PD, what exactly is PD??? And this is not to knock the trials or the people who participate in them.

There is the PD we experience, and the PD the doctors know of, and the PD that researchers can see in our brains, and the PD that pharmas try to treat, the PD that is presented to the public by the orgs.

But are we all even talking about the same thing?

And then there is 23&me that because it is a very different kind of animal, not working on the same basis, it has bypassed the old view of biological science and has come up with all these new connections. From data, just data.

I sometimes feel a bit like a 'reclaim the streets' protester. I want to reclaim my brain, and say regardless of what you think my brain is doing, your picture and mine are very different..... I want them all to stop what they are doing, for a brief time and take a real look at us.

When I feel like this the only single group that I feel are really progressing with finding out what this is about are 23&me, and they are doing that because they are not pre-supposing anything, they are sifting data.

I should really do that spit kit thing.......
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"Thanks for this!" says:
Conductor71 (04-14-2012), paula_w (04-14-2012), pegleg (04-15-2012)