In Remembrance
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Join Date: Aug 2006
Location: Florida
Posts: 3,904
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In Remembrance
Join Date: Aug 2006
Location: Florida
Posts: 3,904
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it's almost not worth it
I think it behooves everyone to study this data with a fine tooth comb. To keep from rambling, I'm going to list my questions and concerns - not to be taken as facts.
I wonder if:
Spheramine is not enough of a magic bullet - that's what they are looking for. It's too subtle.
I wonder if the technology used, as well as the substance, is already outdated. Isn't anything developed that long ago suspect for being replaceable with something that would make more money by now? This is what we kept saying about GDNF - stop and treat - don't keep waiting for the silver bullet.
How much of the results depend on the individual surgeon and staff at the various centers?
How many of the patients with no uncertainty have PD? Then there are subtypes. Was this data run with updated information on subtypes? Can it be? What about other conditions? [ I am sorta surprised that diabetics were allowed to participate in the ceregene trial, but don't begrudge the fact. ]
Has there been a consistent champion for Spheramine?
Are there patients out there who are really upset over this? Peg is not happy by any means, but was educated enough to expect it. She feels that it definitely helped and still is making a difference, but she has only received it on one side and feels that the effects are waning after 8 years and was hoping to get the other side done to buy her more years. Peg correct me if I am misspeaking about this. Are there people out there who will be surprised if they have been shammed? Is there a reason for them to be upset that they may not ever get the real thing?
Are people saying that it changed their lives?
If so, there lies our perpetual problem. They are looking for a silver bullet because otherwise it will be replaced. What they start is already replaceable by the time it gets to phase II. Treatments don't make it out of phase II.
Which brings us to the next one - gene therapy and ceregene. Already in phase II - which shows us how much progress has been accomplished in streamlining the drug development process . But even a ceregene investigator [ a very prominent pd researcher] told me face to face he'd rather be using GDNF instead of neurturin.
Right process, wrong drug. Right drug, wrong delivery. Right delivery, right drug not shared. And if you aren't blinded, your miraculous recovery is all in your head. Spheramine participants - I feel for you..and hope you discover the truth.
Bayer -profit over people of course. They flew the coop before the ink was dry.
paula
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paula
"Time is not neutral for those who have pd or for those who will get it."
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