We thank Ms. Kansky for her expression of concern and interest in our study.
The University of Miami Procrit Study is indeed a clinical trial funded by the
National Institutes of Health (NIH), National Heart Lung and Blood Institute.
The study is a five year study designed to determine whether persons with CFS,
who have diminished red blood cell volume, will experience clinical improvement
through treatment with Procrit. Procrit is a federally approved medicine that
stimulates the body to use its own mechanisms to increase red blood cell
production. The treatment intervention lasts about 4 months. Because the red
blood cell transports the needed oxygen and blood sugar to the cells, the study
hypothesis is that increasing red blood cell volume will act to decrease fatigue
and other CFS symptomatology and improve circulatory control. We are assessing
the role of the immune and circulatory systems in the treatment outcomes. This
study is a placebo controlled design but if those with low red blood cell volume
are initially randomized to placebo treatment they will be offered an
opportunity to receive the Procrit treatment in a follow-up study phase.

Ms. Kansky points out in her note that there have been two previous pilot
studies that have not shown positive results. The problem I have with this
statement is that it suggests that these studies were a complete assessment of
the value of the Procrit treatment. In fact, Dr. Bell who was an investigator
mentioned by Ms. Kansky of one of the pilot studies, was also a coinvestigator
with Dr. Streeten in another small but published study that showed very
promising effects of Procrit (epoetin alpha) treatment. The fact that the
studies to which Ms. Kansky refers were pilot studies indicates that indeed they
were not complete. Given that there is other compelling evidence to support the
use of Procrit to treat CFS patients with diminished red blood cell volume, a
panel of about 20 esteemed scientists at the NIH have reviewed the evidence and
have resoundingly agreed that such a study should be conducted. Hence we
received funding to do this in the fall of 2000.

Ms. Kansky speculates that someone gave out their mailing lists of CFS patients
to us. This is absolutely NOT true. I was interviewed by a local news station
and the report was picked up and broadcast nationally. The news report was
solicited by the TV station and was not a paid advertisement. The fact that the
report was picked up by affiliated stations across the country occurred without
our knowledge. We received more than 1000 inquiries from interested persons
around the country and from Canada. In order to treat these persons with the
respect and dignity that they deserve, we hired additional staff to as promptly
and efficiently as possible respond to each and every person who inquired.
Contrary to the suggestion of impropriety made by Ms. Kansky, we have not
offered the National CFIDS Foundation nor any other organization any money for
their lists of patients.

We are doing our level best to try to examine the pathophysiology of this very
devastating disease and have made a great deal of progress thanks to the help of
a great many persons afflicted with CFS. We thank you for your support. We are
midway through the study and hope to have some preliminary findings submitted
for publication in the spring.

Barry Hurwitz, Ph.D.
Professor
Behavioral Medicine Research Center
(200 BMRC)
c/o VA Medical Center
1201 NW 16th Street
Miami, FL 33125

Below is an updated web link to our web page describing the study.

http://www.bmrc.miami.edu/research/niaid/procrit.asp

A brochure and registration forms can be viewed by clinking on the links below

BROCHURE

http://www.bmrc.miami.edu/research/niaid/brochure.pdf

REGISTRATION FORMS

http://www.bmrc.miami.edu/research/niaid/CFS_INITIAL_ELEGIBILITY_SUR.PDF

If you have questions please email me at AlexGonzalez@...

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