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Correspondence with the Chronicle editor
Move to women’s office will help research
There has been much
discussion about the announcement from the National Institutes of Health (NIH)
that responsibility for chronic fatigue syndrome (CFS) research will move from
the National Institutes of Allergy and Infectious Diseases to the Office of
Women’s Health, housed in the NIH Director’s office.
While many have questioned the impact of classifying CFS as a “women’s health
issue,” I see opportunity. For too long research on CFS has been
“compartmentalized.” Individual investigators have looked at singular
abnormalities with little integration of their findings with other data and
It seems to me that efforts made by women’s health advocates will benefit CFS
research. Through the Office of the Director, NIH officials can draw on research
and resources from numerous disciplines and can encourage collaborations that
yield more meaningful results.
It’s important that as advocates we not overlook the
fact that men and children/adolescents get
CFIDS too, but the possibilities that will
arise from elevating
CFIDS to the office of the
NIH director will benefit all PWCs, regardless of gender or age.
Clare Newbrand, RN
Kudos to Hillenbrand, Association for
I want to
express my whole-hearted thanks to author Laura Hillenbrand and other people
with CFIDS (PWCs) who are helping to shatter
the myths and lift the stigma of this disease. PWCs need credible celebrity
spokesmen like Hillenbrand to counteract the damage caused by a few members of
the medical and mental health communities. Her work, plus that of responsible
journalists like Paula Chin (“The disease that nearly destroyed me,” Ladies
Home Journal, 2001) gives currency and a 21st-century face to a disease that
may have been around for centuries, yet is still not uniformly diagnosed.
As a PWC, I have fought for my health, for pain control, for disability
benefits, for non-discrimination and for public awareness about
CFIDS . It’s good to have Hillenbrand — and The
CFIDS Association of America — on my side.
A PWC in
Editor’s note: For more information about Hillenbrand and her continuing
efforts to raise CFIDS awareness,
please see the Media Watch section.
Don’t rush to change name
I would like to make a couple of
comments about the proposed name change for
CFIDS . I feel that it’s important to retain the
word “fatigue” in the new name. There are already enough doctors who draw a
complete blank when we try to explain being drained, depleted, wiped out and
literally exhausted. We want to keep establishing a connection in people’s minds
between the principal symptom and the illness.
For 15 years, I have had another disease as well: chronic inflammatory
demyelinating polyneuropathy (CIDP). This unfortunate title should bring home
the point that a name and a complete medical description are two different
entities serving two different purposes! Let’s not make the same mistake.