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Old 06-15-2012, 06:19 PM
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
Default when is a scam a scam?

Quote:
Originally Posted by lurkingforacure View Post
Count us as another "no", I wish it had worked but it didn't. Plus, insurance wouldn't cover it (can't blame them, if it doesn't help!) and it was darn pricey.

Sorry, we, too, were really optimistic on this. Having said that, I read where it did help some folks, I just don't know why some benefit and others do not.
I think we need to define scam very specifically and possibly change some policy. If this already exists, it's not working. Since it's difficult to capture enough peoples' experience, the definition needs to be in the developer's language.

Is a small 'scam' defined by how many people SAY it works when it doesn't? But they think it does and actually improve. Even big trials make false claims and have hurt those who get the placebo.

The Cere 120 trial is getting results and the CEO told me that it really works for some people. This is as good as it gets. The Ceregene Co. has "done the right thing" by following up and finding new positive results at 18 months. They went back to work on it because patient participants were simply followed monitered and data continued. Unbelievably, the GDNF trial didn't follow up on the patients when the patient participants were all claiming great growth. even calling it a cure.This was too expensive a delivery system and had to be refilled every month[?]; week [?] not sure.

I think the old saying is still true. If it sounds too good to be true, it likely is. we'd all have heard about it ....some suppliments seem to help - like curcumin and coconut oil. The rest I take if i'm low in a blood test like vitamin D or potassium. I have perfect vitals and blood results - i'm not sure how - but so far so good.

So is it a scam when large companies make BIG promises and drill holes in your head for nothing, then basically lie about whether you have med or not? These are the trials that the FDA approves.

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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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"Thanks for this!" says:
olsen (06-17-2012)