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Name Change Advisory Board, January 2007
(left to right) Drs. Anthony Komaroff, David Bell, Nancy Klimas,
Leonard Jason, Charles Lapp, Lucinda Bateman, Paul Cheney.
Not pictured is Dr. Daniel Peterson.
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Patients led the call for this campaign, bringing together an amazing group of people who have made this work their own. Whether serving on the Name Change Advisory Board (NCAB) or Fair Name Implementation Committee (FNIC), these individuals bring a sensitivity and tireless devotion to the cause.
NCAB members, whose combined medical research and clinical experience totals more than 150 years, include Drs. Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Leonard Jason, and Daniel Peterson. Click on any of their names to read a bio and learn more.
The FNIC roster includes highly dedicated and respected patient advocates, doctors, celebrities and other VIPs, who share one goal: to acknowledge the severity of CFS and change the name to reflect this severity. The committee's membership presently stands at more than 20 members; click on the links below to read a bio and to learn more.
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LUCINDA BATEMAN, MD: Founder of the Salt Lake City-based Fatigue Consultation Clinic, executive director of OFFER (The Organization for Fatigue and Fibromyalgia Education & Research), board member of the CFIDS Association and IACFE/ME. |
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DAVID BELL, MD: One of the first to recognize ME/CFS as a legitimate medical condition during the Lyndonville outbreak in 1985, he has never given up on patients with what he terms the "neuro-immune fatigue spectrum," or his work to find a cause & cure. |
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RIK CARLSON: An author, patient advocate, documentary maker, and founder of the Vermont CFIDS Association, he has lobbied hard to achieve respectful, informed diagnosis and treatment of ME/CFS/FM patients - in the state of Vermont and nationally. |
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RICH CARSON, ProHealth founder and patient advocate; himself an ME/CFS patient, has led the call for this campaign, bringing together an amazing group of people who have made this work their own. |
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PAUL CHENEY, MD: A consummate scientist, founding director of the International Association for CFS/ME, and partner over the years with Drs. Daniel Peterson, Charles Lapp, and David Bell. His research to understand and treat diastolic dysfunction in ME/CFS is followed worldwide. |
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KENNY DEMEIRLEIR, MD, PhD: World-renowned ME/CFS clinical/research leader at the Free University of Brussels in Belgium, co-editor of the Journal of Chronic Fatigue Syndrome, co-developer of the Canadian Consensus Document for ME/CFS, and author of more than 600 articles. |
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JOHN HERD: A passionate spokesperson and crusader for patients' rights, he's been called a "veteran advocate" by the CFIDS Association for faithful attendance at major conferences, and is "on a first-name basis with most of the pioneers" in ME/CFS research and patient care. |
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EILEEN HOLDERMAN: A trustee of the New Jersey CFS Association - a nonprofit organization dedicated to supporting patients by promoting research, sponsoring medical scholarships and area support groups, and organizing informative conferences on research & treatment. |
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MARC IVERSON: The founder of the CFIDS Association of America, which was to become the world's largest charitable organization dedicated to supporting research to conquer ME/CFS, and in the late '80s helped Drs. Cheney, Lapp, and Bell to form The Cheney Clinic. |
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LEONARD JASON, PhD: Director of the Center for Community Research at DePaul University in Chicago, and Vice President of the IACFS/ME, he is a leader in the scientific study of ME/CFS, and a key driver of collaboration between the clinical, patient, and government communities. |
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CORT JOHNSON: An ME/CFS patient who has put his scientific knowledge to work on behalf of others, he offers understandable reports on the latest ME/CFS research as founder of the website Phoenix Rising: A Guide to ME/CFS and the Phoenix Rising newsletter. |
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YVONNE KEENY: Founder of the Fibromyalgia Coalition International, a nonprofit that helps thousands of FM and ME/CFS patients "turn cope to hope" by offering information and resources with a focus on nutritional science and alternative strategies to support optimum health. |
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NANCY KLIMAS, MD: President of the International Association for CFS/ME, a global organization of ME/CFS clinical & research scientists, and a research leader as Professor of Medicine - Psychology, Microbiology, & Immunology at the University of Miami Medical School. |
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CHARLES LAPP, MD: One of the pioneer physicians who first brought CFS to national attention, he directs the ME/CFS/FM focused Hunter-Hopkins Center in Charlotte, NC. He is a member of the federal CFS Advisory Committee, and serves on the board of the IACFS/ME. |
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MIKE MUNOZ: As President of the Denver-based Rocky Mountain CFIDS and FMS Association, he applied professional skills and vision to turn a local support group into a high profile hub of patient and professional education, awareness building, support activities, and research funding. |
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DANIEL PETERSON, MD: An ME/CFS specialist practicing in Incline village, Nevada. He and then-partner Dr. Paul Cheney, MD, were among the first to identify what came to be called CFS in the U.S. His continuing research has focused on the study of virus-related causes and treatments. |
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KAREN LEE RICHARDS: A HealthCentral.com patient expert on chronic pain, she is a co-founder with Lynn Matallana of the National Fibromyalgia Association and former Executive Editor of Fibromyalgia AWARE - the first magazine dedicated to FM and other invisible illnesses. |
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MARLY SILVERMAN: Founder of P.A.N.D.O.R.A. - a Florida-based nonprofit that co-hosted the 2007 IACFS/ME conference and has grown in a few years to provide resources that improve the quality of life for ME/CFS and FM patients at the local, state, and national levels. |
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STACI STEVENS: An exercise physiologist known for groundbreaking work with colleagues to devise a stress test that differentiates ME/CFS patients from normal controls by measuring the physiological impact of exertion - what Dr. David Bell has called the "Stevens Test." |
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MONA TALIAFERRO: A patient and one of the nation's leading ME/CFS philanthropists, she is a high-profile entrepreneur in the technology consulting sector who's been inducted into the Women's Business "Hall of Fame" and chosen as a finalist for Ernst & Young's "Entrepreneur of the Year" awards. |
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DOROTHY WALL: Author of the award-winning book Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (2006)- an evocative account of her personal experience with the illness plus a review of its history, science, and politics. |
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ANNETTE WHITTEMORE: A philanthropist supporting ME/CFS research endeavors since 1994, founder with Kristin Loomis of the HHV-6 Foundation, and founding director of the planned Whittemore Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno. |
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