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Correspondence with the Chronicle
Six years ago,
on an early spring morning, I
painstakingly made my way to a New Jersey CFS Association Conference in New
Brunswick. It was first time I'd managed to travel outside New York City since
having been diagnosed with CFS the previous fall, and I'd been primarily
bedridden for nearly a year.
During that long year,
the vision of a film documenting all that I had seen and heard about my baffling
illness had grown strong. Each time I saw a well-meaning but confused,
superficial treatment of the illness in the media, my rage and determination to
change that in some small way reared its head.
And so, with that
sentiment, I met with CFIDS Association of America President Kim Kenney and Jon
Sterling, then head of the New Jersey association, to tell them of my background
as a filmmaker and of my vision in the event that they might be able to help.
Over the years, both of these dedicated individuals along with the organizations
they represented did indeed help support this "little engine that could" in many
Even more important
was the inspiration and faith I derived from all of you who broadly define "the
CFIDS community." Each time I received a check from someone who might have been
dipping into scarce resources to help shepherd the film along to its next phase,
I was moved, and I was determined to move forward.
During the making of
"I Remember Me," I interviewed more than 100 people on camera, researched
documented clusters of the illness, combed through archival press materials and
continued to document my own struggle. I did not and could not do this alone.
The help of my able-bodied co-producer, other crew members - some of whom worked
for little or no money - my family, doctors and friends all helped along the way
to prop me up when I was in lesser health.
Now my film is out there, changing
minds about this illness and the
that have often plagued it. For that I am thrilled. This would not have been so
without the help of The CFIDS Association of America and its staff. It is my
hope that "I Remember Me" will now become the cornerstone of a campaign to raise
further awareness, and will be used educationally and for advocacy purposes. The
point of all the foresaid is to celebrate together. We have made a difference
and this would not, and could not, have happened without the support of each and
every one of you who took the time to write a letter of encouragement in times
of frustration and pessimism, to write a check, or to make it to one of the
screenings and tell me what it meant to you, and for that I thank you from the
bottom of my heart.
Kim A. Snyder
Director, "I Remember Me"
need help, too
are very important for people with CFIDS
(PWCs). The groups help PWCs come together to share their experiences. It is
always comforting to know you're not alone.
As the mother of a
PWC, I know that caregivers also need the same support. When someone in the
family develops CFIDS, it affects everyone. Life changes; we must be ready to
deal with every problem the disease brings, from doctors' appointments to
nutritional concerns to emotional crises.
not helping their loved ones if they become
martyrs and don't
find time for themselves. So be kind to yourself. Find the support you need -
form a group of your own. Your needs are different, but just as real, as those
you care for. You will be happier, healthier and better able to help your family
Ann McFerron Severn, Md.
Editor's note: The National Family Caregivers
Association is an excellent resource. For more information, click on the group's
Web site, www.nfcacares.org