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PARKINSN  June 1999, Week 3

PARKINSN June 1999, Week 3

Subject:

Re: Rashomon & PD PR

From:

Ken Aidekman <[log in to unmask]>

Reply-To:

[log in to unmask]

Date:

Fri, 18 Jun 1999 19:30:47 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (146 lines)

This is definitely a confusing situation.  As Janet mentioned, most of
the basic facts are the same but the spin is completely opposite.  Why
would two sources diverge so completely?

It seems that those who write the news, Associated Press and local and
national newspapers, view positive research results as newsworthy while
mixed or negative results are considered too complex for their readers
to grasp.  I'm not quite sure of why this is but you don't hear a lot of
reports about treatments or procedures that do NOT definitively cure
cancer or control AIDS.  Perhaps we as readers are board by  "Dog Bites
Man" stories.   Given mixed results the newspapers will emphasize the upside.

The National Intstitutes of Health are giving us the results from a
different perspective.  They have just gotten data and analysis from a
very controversial study of a procedure that the Parkinson's community
aggressively pushed as the best potential treatment for PD. Not long ago
fetal tissue surgery was the biggest thing on the horizon offering the
greatest hope in the shortest time frame.  Many procedures were being
done with different protocols and no adequate control group.   This
study cost the NIH (the American people) around four million dollars.
Another similar study is in progress.

The NIH has an obligation to report the facts and not sugar-coat them.
I think the spin is: "Don't put too many eggs in this basket.  Fetal
tissue surgery is no panacea."  Perhaps the spin is even more negative
than that.  Perhaps it is the NIH saying, "We financed the study you
wanted.  It did not produce dramatically positive results so don't
expect us to spend a dispropotionate amount of money in this area in the
future when there are other procedures with more predictable results.

The most important point is that transplanting immature neurons into the
brain of Parkinson's patients can, under the right conditions, provide
dramatic improvement.  This study taught researchers that age matters.
We are obviously not on the brink of treating large numbers of severely
impaired PUWs with it yet because we need to learn why it is not working
adequately on the majority of subjects.

I don't think the NIH assembled scientific boards that approve
neuroscience research are going to be enthusiastic about committing
large sums of money to this specific path of research in the near future
given the multitude of other avenues with great potential.

Phil Tompkins wrote:
>
> Compare these two reports of the same study carefully.  I'm confused.
> Are the results good or not?  What really happened?  It's Rashomon
> all over again.
>
> Phil Tompkins
> Hoboken NJ
> age 61/dx 1990
>
> (For the sake of brevity, I took the liberty of removing what I
> thought was not relevant to comparing the two reports.)
>
> -----------------------------------------------------------------
>
> Excerpt from post here Wed, 21 Apr 1999
>
> From:             John Walker <[log in to unmask]>
>
> Study: Fetal cells ease life for Parkinson's patients
>
> 4/21/99 -- 8:35 PM
> http://www.tampabayonline.net/news/news100h.htm
>
> TORONTO (AP) - A controversial surgery which implants fetal cells
> into an adult's brain have helped many Parkinson's patients improve
> brain function and move better, researchers said Wednesday.
> The researchers studied 38 American and two Canadian patients...
>
> ...
>
> Over the year following the operation, more than half the patients
> who received fetal cells had a significant increase in levels of
> dopamine. But how long the improvements will continue is still under
> investigation.
>
> ....
>
> Most of the benefits of the operation, including better motor
> control, were in patients under 60, said Dr. Stanley Fahn, Freed's
> partner from New York's Columbia Presbyterian Hospital. Researchers
> believe it's because the aging brain is less resilient.
>
> Many patients were also able to reduce or stop taking medication.
>
> ....
>
> [Toronto-area patient Judy] Hazlett said the surgery has resulted in
> ``little but amazing changes.'' She can now sleep through the night,
> carry a spoon without dropping it, and hold her head up. She is also
> taking less medication.
>
> ---------------------------------------------------------------------
>
> Excerpt from the NIH press release of April 21, 1999
> http://www.ninds.nih.gov/WHATSNEW/PRESSWHN/1999/freed.htm
>
>   Fetal Cell Therapy Benefits Some Parkinson's Patients
>    First Controlled Clinical Trial Shows Mixed Results
>
> Results from the first randomized, controlled clinical trial of
> fetal dopamine cell implants for Parkinson's disease show that the
> surgery helped a small number of Parkinson's patients, but not all
> who underwent the experimental therapy. These results raise
> important questions in the search for improved treatments for
> Parkinson's disease.
>
> .....
>
> After 1 year, the treated patients under age 60 (9 of the total
> patients in the trial) showed significant improvements in movement.
> Patients over age 60 who received the implants, as well as those who
> had the placebo surgery, showed no significant improvements in any of
> their symptoms. On another important measure, the study showed that
> patients did not perceive a benefit from the therapy in terms of
> their normal daily activities.
>
> "Any gains against this terrible, common disorder are welcome," said
> Gerald Fischbach, M.D., Director of NINDS. "We are proud to be the
> sponsors of this trial. Although not all measured outcomes were
> positive, there was clear improvement in control of movement in
> Parkinson's patients 60 years of age or younger. There is reason to
> be encouraged."
>
> PET brain scans showed that more than half of the patients who
> received the implants had a greater than 20 percent increase in
> dopamine activity in the putamen, regardless of age. ....
>
> Previous studies of fetal dopamine cells for Parkinson's disease in
> the 1980s and 1990s showed what sometimes appeared to be remarkable
> benefits....Publicity surrounding these early clinical trial results
> led to great patient demand for cell implant therapy. Until now,
> however, researchers could not be certain whether the effects seen
> in these earlier clinical trials were due to the therapy or to
> psychological factors.
>
> ....
>
> While the study results indicate that fetal cell implants can help
> some patients younger than age 60, they also raise important
> questions, including why the treatment did not benefit older
> patients. Furthermore, the implants did not reduce the need for any
> drugs that patients in the study were taking for Parkinson's
> disease.....

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October 2003, Week 5
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October 2003, Week 1
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June 2003, Week 5
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May 2003, Week 1
April 2003, Week 5
April 2003, Week 4
April 2003, Week 3
April 2003, Week 2
April 2003, Week 1
March 2003, Week 5
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March 2003, Week 3
March 2003, Week 2
March 2003, Week 1
February 2003, Week 4
February 2003, Week 3
February 2003, Week 2
February 2003, Week 1
January 2003, Week 5
January 2003, Week 4
January 2003, Week 3
January 2003, Week 2
January 2003, Week 1
December 2002, Week 5
December 2002, Week 4
December 2002, Week 3
December 2002, Week 2
December 2002, Week 1
November 2002, Week 5
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November 2002, Week 3
November 2002, Week 2
November 2002, Week 1
October 2002, Week 5
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October 2002, Week 3
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October 2002, Week 1
September 2002, Week 5
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September 2002, Week 1
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July 2002, Week 1
June 2002, Week 5
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April 2002, Week 5
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April 2002, Week 3
April 2002, Week 2
April 2002, Week 1
March 2002, Week 5
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March 2002, Week 3
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April 2001, Week 1
March 2001, Week 5
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March 2001, Week 3
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March 2001, Week 1
February 2001, Week 4
February 2001, Week 3
February 2001, Week 2
February 2001, Week 1
January 2001, Week 5
January 2001, Week 4
January 2001, Week 3
January 2001, Week 2
January 2001, Week 1
December 2000, Week 5
December 2000, Week 4
December 2000, Week 3
December 2000, Week 2
December 2000, Week 1
November 2000, Week 5
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November 2000, Week 3
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November 2000, Week 1
October 2000, Week 5
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October 2000, Week 1
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September 2000, Week 1
August 2000, Week 5
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August 2000, Week 3
August 2000, Week 2
August 2000, Week 1
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July 2000, Week 3
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July 2000, Week 1
June 2000, Week 5
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May 2000, Week 3
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April 2000, Week 5
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April 2000, Week 2
April 2000, Week 1
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February 2000, Week 3
February 2000, Week 2
February 2000, Week 1
January 2000, Week 5
January 2000, Week 4
January 2000, Week 3
January 2000, Week 2
January 2000, Week 1
December 1999, Week 5
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December 1999, Week 3
December 1999, Week 2
December 1999, Week 1
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November 1999, Week 3
November 1999, Week 2
November 1999, Week 1
October 1999, Week 5
October 1999, Week 4
October 1999, Week 3
October 1999, Week 2
October 1999, Week 1
September 1999, Week 5
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September 1999, Week 1
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April 1999, Week 1
March 1999, Week 5
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March 1999, Week 3
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March 1999, Week 1
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February 1999, Week 3
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February 1999, Week 1
January 1999, Week 5
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January 1999, Week 3
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December 1998, Week 5
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February 1998, Week 5
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February 1998, Week 3
February 1998, Week 2
February 1998, Week 1
January 1998, Week 5
January 1998, Week 4
January 1998, Week 3
January 1998, Week 2
January 1998, Week 1
December 1997, Week 5
December 1997, Week 4
December 1997, Week 3
December 1997, Week 2
December 1997, Week 1
November 1997, Week 5
November 1997, Week 4
November 1997, Week 3
November 1997, Week 2
November 1997, Week 1
October 1997, Week 5
October 1997, Week 4
October 1997, Week 3
October 1997, Week 2
October 1997, Week 1
September 1997, Week 5
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September 1997, Week 1
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February 1997, Week 1
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December 1996, Week 5
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December 1995, Week 5
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February 1994, Week 4
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