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Phil,
I think I may have misunderstood your initial point. One would not expect
new cell growth if there were no transplanted cells but unexpected things
do occur.  If new cells did grow as the result of "sham surgery" it would
be nothing short of a miracle and I would suggest that NIH or the
Alliance fund a seed grant and hire a mystic to channel  the spirit of an
ancient shaman to revive the art of trephining  which involves drilling
holes in the skull to let out evil spirits (and believe it or not many
people apparently survived ).  And, maybe I will ask Dr. Penn on Tuesday
just to drill a few more holes and implant a 2 old transistor radios
instead of the stimulators.

Dr Johnson's comments that PD patients are unusually sensitive to the
placebo effect certainly makes sense to me from my own experience. I
think your idea of the negative placebo effect- makes a lot of sense and
going from a state of hopelessness to a state of feeling that there is
real hope and that we have taken back some of the control that this
damned disease has taken away from us makes a big difference in both what
we are able to do and how we perceive it.

As I said before however in the final analysis the value of the procedure
has to be evaluated on the basis of  substantial clinical improvement (or
slowed deterioration) compared to a placebo.  Nothing else justifies the
risks of that procedure. (fetal transplant) as a regular treatment for
PD.

Thanks for the good wishes.

Charlie

Phil Tompkins wrote:

> I have a question about why placebo surgery is done for tissue
> transplants.  I think there is something odd about the reasoning
> that is supposed to justify it.
>
> In the 20/20 TV program on PD transplant surgery, Dr. Timothy Johnson
> noted that "drug studies have already proved that patients with
> Parkinson's are very responsive to the placebo effect", apparently
> implying that the placebo effect is less in most other diseases.
>
> It would be useful to determine precisely why this is so.  Perhaps
> having a progressively deteriorating condition for which there is no
> cure is itself the source of a nocebo (negative placebo) effect.  If
> the baseline is negative to begin with, then of course the placebo
> effect would be greater.  However, this is not my main point.
>
> In his next sentence, Dr. Johnson indicates that the great
> responsiveness of PWPs to the placebo effect is the reason for the
> placebo surgery.  "So to avoid the possibility that the experimental
> surgery was simply causing a placebo effect, the doctors insisted
> that their new study compare real surgery with implants against fake
> surgery with no implants."
>
> I do not see how Dr. Johnson's statements justify placebo surgery for
> tissue transplants.  The purpose of the tissue transplants is to
> replace those cells which are missing due to the disease, so as to
> re-introduce the function which the missing cells had.  The success
> of the surgery ought to be measured by whether or not this purpose
> was achieved.  Hugh Downs noted, "new cell growth has been seen only
> in patients who got the actual cells."  How could it be otherwise?
> How could one expect tissue growth from tissue which has not been
> implanted?  How, then, can placebo "non-transplant" surgery indicate
> whether or not the real transplants were successful?
>
> Phil Tompkins
> Hoboken NJ
> age 61/dx 1990

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Charles T. Meyer,  M.D.
Middleton (Madison), Wisconsin
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