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President's Message
by Gail Kansky

    During the past months, much of the world's attention has been focused
on SARS.  Another modern scourge, AIDS, was addressed by the U.S.
Centers for Disease Control and Prevention (CDC) when they issued new
guidelines.  These guidelines attempted to address the lamentable but all too
true fact that, more than 20 years into the infection, there are still 40,000
new infections in this country alone from AIDS.  Fully one quarter of those
that are HIV affected don't know it, increasing the chances of spreading the
syndrome.  Typically, the CDC's proposals did not come with any new
proposal for funding.  Once again, just as with ME/CFIDS, the CDC falls
far short in their challenging task.

    Does this discourage us?  No.  We are not counting on the CDC for
helping with ME/CFIDS.  By expecting nothing from the CDC, we have not
been disappointed. After all, did Dr. William Reeves announce the most
significant finding the CDC has made to date?  Rather than going publicly
with such important information, he chose to bury it in such an obscure
medical journal that it took us months to get a copy of it!  Reeves gives
warm and fuzzy interviews touting what the CDC can do in The CFIDS
Chronicle, but when the CDC actually found something that should have
made headlines in the media, they bury it to keep this illness controversial.
After more than 20 years of dealing with this illness as patients and
caregivers, we have learned not to expect help but to take the initiative
ourselves to seek out the researchers that will help unravel the complexities
of this illness.  We have already, long before publication, handed this new
information that the CDC and Reeves chose to keep as quiet as possible to
researchers that care.  Reeves talks about what gene research can do (as
does Dr. Suzanne Vernon) but at the same time the CDC hides what they
already know!  These are months that are stolen from patient's lives in a
study that was published last year!  There is no excuse for the CDC's
actions but we are not surprised by them.

    We have clawed and fought for answers and have begun to, at long last,
begun to bear fruit.  We work on a shoestring and yet have made more
progress than others who boast of spending millions.  We seek out the
researchers we need to connect the dots for us and they are, in turn, grateful.
In return, we applaud their dedication to truth.  They understand that we  are
patients and we are interested in only real answers that can lead to restoring
our lives instead of the existence we are forced to live with.  We aren't
interested in fame or fortune.  We're interested in real science, real answers,
and real treatments that will follow only when the cause is exposed.

    The pathology department at the John A. Burns School of Medicine at
the University of Hawaii are hard at work tearing apart the chemistry of
what turns the test for ciguatera toxin so high in  ME/CFIDS patients.
Before your fall issue arrives, publication of their paper in the Journal of
Clinical Analasis will be a reality. While it may seem they've taken a long
time to do this, we must remind ourselves that they began only last January!
When they have completed this, we intend to fund them once more to find
out how to block this from doing so much damage in our bodies.  We feel
that we are closer to answers than we have ever been before.  Meanwhile,
we have been in touch with other researchers that we feel can be trusted to
help with other parts of the cause so that results can come as soon as
possible.  When we know of just one thing that could help, we will let you
know!  However, this is a very complicated illness and we have to connect
all the dots...but we are already well on our way.

    For those new members who have just joined our Foundation, click here for
the testing protocol for ciguatera toxin.  For those who have already been tested,
we know you're impatient and have every right to be.  Too many years have
already been wasted waiting for real answers, but the time is coming.  It can't
come soon enough for any of us but we want to find the entire answer so that
we can accomplish our goal to be able to go out of exitence because we no
longer have a reason to exist.

When you get your results back showing you are positive (we're still waiting to hear
from just one member who tests negative!), it does not mean that you have the
actual poison of ciguatera in your body.  It probably will turn out to be something
very similar...similar enough to turn the test results so high and it probably will affect
the body in much the same way as the actual toxin.  Know that the puzzle is being
put together piece by piece at this time.  We are no longer funding the mechanisms
of ME/CFIDS but only links to the direct cause.  That is the only way we believe
real treatments will become available.  To all those who have helped in our fundraising
efforts, please know how very grateful we are.  Know that we will not stop until we
have unraveled the entire cause and gotten our collective lives back.  Although we
know it won't be this month or next, we know it will be soon.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606