The CFIDS Monthly Update: May 2001

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Should CFIDS patients donate blood? In response to the tragic events that took place on September 11th , there has been a call for blood donors across the nation. The Association recommends that CFIDS patients refrain from donating blood, bone marrow or organs, as it is currently unknown whether or not this is a safe practice since the contagion issue has not been resolved. Additionally, donating blood may not be safe for persons with CFIDS (PWCs), as research has shown that many PWCs have low blood volume and other vascular problems and removing additional blood could provoke a relapse.

Kim Kenney honored with Redbook award. K. Kimberly Kenney, President and CEO of The CFIDS Association of America, has been named one of the winners of Redbook Magazine’s fourth annual Mothers and Shakers awards. This year’s awards honor women who have made a difference in health care.

The Redbook awards are highly selective–only 12 individuals have been chosen by the magazine’s editors from a large field of candidates. Ms. Kenney is being honored for her work on behalf of persons with CFIDS (PWCs).

The awards were presented at the Lincoln Center in New York City on September 10. Hillary Rodham Clinton, Sarah Ferguson, duchess of York and Christy Turlington were among the celebrity honorees. The October issue of Redbook features an article profiling each of the award winners.

Update on CDC’s CFS research program. The U.S. Centers for Disease Control and Prevention has posted an update on its CFS research program at: If you would like a copy of the report, please send a self-addressed stamped envelope to The CFIDS Association of America, Attn: CDC CFS research program, PO Box 220398, Charlotte, NC 28222-0398.

Author appears on Good Morning America. Laura Hillenbrand, PWC and author of the best-selling novel, Seabiscuit: An American Legend was interviewed on Good Morning America on August 29. To view a transcript of the interview with Dr. Nancy Snyderman, Click Here

The CFIDS Association of America is pleased to announce the availability of chronic fatigue syndrome (CFS) research grants. The CFIDS Association of America’s Research Grants Program provides financial support to researchers in various medical disciplines studying CFS. Since 1987 the Association has provided over $3.4 million in grants to CFS researchers.

The purpose of the Association’s peer-review Research Grants Program is to provide financial support to the highest-quality pilot research studies and thus enable investigators to collect sufficient data to seek future support from government or private funding sources. For more information visit

Maximize the value of the CDC payback funds. The Association has kept vigilant watch over the $12.9 million being restored to the CFS program at the Centers for Disease Control and Prevention (CDC). Thanks to steady “encouragement,” the CDC has ramped-up its efforts to include molecular epidemiology studies to identify unique gene patterns which may distinguish CFS patients, a promising collaborative effort with researchers at Emory University using alpha-interferon treatment as a model for CFS and a pathogen discovery program done both at the nucleic acid and antibody/antigen level

The CFIDS Association of America kicked off its Annual Fund 2001 on September 25th. This essential campaign, established in 1998, is a yearly effort designed to sustain, strengthen and accelerate programs in CFIDS education, public policy and research.

The decision to launch the campaign as planned was a difficult one. The Association is deeply saddened by the shocking events of September 11th and continues to grieve for those who lost their lives and loved ones in New York City, Pennsylvania and Washington, DC.

In the wake of these tragedies we all must find the resolve to move forward, including non-profits whose missions do not directly involve relief efforts. Every charitable organization must remain focused on and responsive to their communities, be they victims of abuse, missing children or people struggling with chronic illness. The CFIDS Association of America is dedicated to its mission to conquer CFIDS and to helping those with the illness reclaim their lives.

We are inspired by the American public’s historic support of crisis-relief efforts and are equally grateful for your generous gifts to speed progress towards a cure for CFIDS.

Meetings of Interest

The New Jersey CFS Association’s 10th annual fall conference, New Developments in the Clinical Management of CFS will be held on Sunday, October 14 at the Sheraton Conference Center in Eatontown, NJ. Co-sponsored by the Monmouth Medical Center, this conference will provide vital information on CFS for health care professionals, patients and their family members. Featured speakers include David S. Bell, MD, FAAP, Lydonville, NY; Peter C. Rowe, MD, The Johns Hopkins University School of Medicine; Susan M. Levine, MD, FACP, New York, NY; Gloria Furst, OTR/L, MPH, Rehabilitation medicine Department at the NIH. For more information call 973-635-4361 or 732-870-5500.

The Well Informed CFS Patient: Opening Doors to Better Care, co-sponsored by CFS

Association – Minnesota (CFSA-MN) and the American Association for Chronic Fatigue

Syndrome (AACFS), will be held Sunday, October 28, at the Holiday Inn Select in Bloomington,

Minnesota. Featured presentations will be given by Dr. Benjamin Natelson, Dr. Leonard Jason,

Dr. Charles Lapp and Donald Uslan. Barbara Comerford, JD will discuss disability issues such

as Social Security Disability and ERISA. For more information, please contact CFSA-MN at


On behalf of The CFIDS Association of America, we thank you for your support and encouragement in our efforts to conquer CFIDS.

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