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Summer 2002

Readers’ Forum
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 studies.

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
Glen Allen, Va.

Kudos to Hillenbrand, Association for CFIDS work
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 California

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.

Anna Thomas
Olympia, Wash.