View Single Post
Old 01-09-2009, 10:09 PM
Tom819 Tom819 is offline
Junior Member
 
Join Date: Sep 2006
Posts: 9
15 yr Member
Tom819 Tom819 is offline
Junior Member
 
Join Date: Sep 2006
Posts: 9
15 yr Member
Default The Emotional Component - We are not lab rats!!!

I would like to thank the regular contributors to this forum for their tireless dedication in the quest to find an effective treatment and ultimately, the cure. I thought the unity I felt on the old Braintalk forums was gone but its back and stronger than ever.

Although I still don't know what my stats were, I was one participant that had a very impressive placebo response. Here's why I think this happened:

Just prior to signing up to be a participant in this trial, I didn't realize how discouraged I had become about the future. There's no doubt I was very lethargic and sedentary and frankly my partner (who I love to death and couldn't live without) was become more frightened and pessimistic as I progressed.

I remember my study doctor making a dramatic statement more than once "Tom, you are the perfect candidate" having one the lowest early advanced motor scores off meds and improving by roughly 40% on meds.

I remember my son at age 10 absorbing the idea of real vs sham surgery and seeing other advanced patients in the waiting room and it broke my heart as I saw the fear in his eyes.

One of the most touching moments of my life was seeing my son's reaction when I told him Dad was accepted into the trial. I called him at his friends house and he dropped the phone ran up the street at top speed and grabbed me, hugged me and told me he loved me.

After seeing how the possibility of recovery affected my family, I wanted it to happen very badly. If Ceregene wants to minimize the placebo response, I think they need to spend more time on the psychological make up of each candidate.

Futhermore, I have no objection to the concept of sham surgeries in clinical trials as long as there is a guaranteed reward for participating. I'm not sure how this could be implemented but I know how much it hurt to watch my son cry when he heard I was in the placebo group and to realize my consolation prizes were two long scars on the top of my head and some lovely parting gifts.

Putting placebo patients through great emotional and physical trauma and taking every precaution to make the experience feel as real as possible does one thing to a clinical trial - it corrupts the results by producing an abnormally powerful placebo response.

Bottom line:

There are people right now that participated in the Spheramine and Ceregene trials who had a very significant response to receiving the real treatment and went from having advanced PD back to early stage PD. It would be shameful if the potential for these treatments never gets realized due to the design flaws that created such a powerful placebo response.
Tom819 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
CarolynS (01-10-2009), Curious (01-09-2009), jeanb (01-10-2009), paula_w (01-10-2009), pegleg (01-09-2009)