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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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Charles, I have your surgery on my wall to remember you on that date. I
am so excited to be joined by others that need the surgery too. I pray and
tthink of you through out your surgery. Please let me know how you are
doing as soon as you can.
x>Phil and others,
>
>I have wanted to put my 2 cents in this but have been busy. I have a
>lot to say about this kind of surgery having been a participant. I
>strongly support the concept and perhaps I will get a chance to write
>more late. I have written an article for the upcoming PDF newsletter
>which touches on it. But I do want to comment on your issues Phil.
>
>I think that the ethics of purposely doing a surgical procedure on a
>patient and putting them at risk without the benefit of that accruing to
>someone is questionable. In the case of the double blind placebo trials
>while the benefit to the "sham" surgery recipients were as great if the
>treatment group did not improve in quality of life and improvement of
>symptoms than the placebo group then the study would indicate that fetal
>cell transplants (at least done according to that protocol) are not
>worth the risk of injecting foreign cells into one's brain. The fact
>that the cells grow and develop connections is important scientifically
>but means nothing therapeutically. The reason these studies were done is
>to establish this one way or another. The value is to protect patients
>from risk. The placebo effect is a byproduct. In clinical medicine it
>should be utilized in the interest of the patient but not in a way that
>increases risk. The little risk incurred as being a placebo patient in
>the study is knowingly undertaken to either prove that the surgery has
>value or prevent unnecessary procedures from being done in the future.
>
> I also think Kaplan- the Univ of Pa medical ethicist while getting a
>lot of TV coverage in his opposition to "sham surgery" is dead wrong and
>is disrespectful of our ability as patients to make an informed decision
>as to whether we participate
>
>I have written much that I am not putting in this post but when the
>issue comes up again- and I am sure it will I have a lot more to say.
>
>Personally, surgery (DBS- STN) is Tuesday May 18. (with the real thing
>guaranteed). From the posts on the list it looks like I will be joining
>a growing "club". Thanks especially to Jane Ross and the other pioneers
>who participated in the early studies in DBS. Also thanks for all the
>good wishes I have gotten from so many of you during the past couple of
>weeks.
>
>I'll try and keep you informed, of my progress (I hope!)
>
>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
>
>--
>*******************************************************************************
>***********
>
>Charles T. Meyer, M.D.
>Middleton (Madison), Wisconsin
>[log in to unmask]
>*******************************************************************************
>***********
>
>
>
>
>--
jjjane
http://www.geocities.com/soho/village/6263/pienet/people/hithross.html
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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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