Programs
Since its founding in 1987, the CFIDS Association of America has invested over $22.3 million in its CFIDS education, public policy and research programs to bring an end to the incredible suffering caused by CFIDS.
CFIDS Education and Awareness Efforts
Information can empower. It can provide comfort, encourage, validate and motivate. The CFIDS Association is committed to meeting the varied information needs of people with CFIDS (PWCs) and the other audiences we serve – caregivers, medical professionals, members of the media and general public, legislators and public health officials.
Since publishing our first issue of the CFIDS Chronicle in 1987, the CFIDS Association has become one of the nation’s most trusted sources of information about CFIDS. The Chronicle, distributed quarterly to Association members, covers a broad spectrum of CFIDS-related topics — from how to file a successful disability claim to joint hypermobility and its link with CFIDS, and from the search for a biomarker to complementary therapies to beating the high cost of prescription drugs.
Current, reliable information about CFIDS is also available through our research-oriented publication, the CFS Research Review, our free monthly e-newsletter, CFIDSLink, and this website, http://www.cfids.org/.
In 2005 the Education and Empowerment conference series was launched, an effort to bring nationally recognized experts to patients and caregivers around the country. Five half-day conferences have been held so far, in Reston, Virginia, Charlotte, North Carolina, Akron, Ohio, Sacramento, California and New Brunswick, New Jersey. Read a report about the most recent "kNOw MORE" meeting at http://www.cfids.org/cfidslink/2007/ee1.asp.
In June 2006, the Association launced the Spark! campaign to ignite awareness among the general public and health care professionals.This integrated communications campaign is supported by the Centers for Disease Control and Prevention. Paid print advertising, public service announcements for TV and radio and extensive media outreach will help build understanding for CFIDS as a widespread, serious and disabling condition. Read more about the November 3, 2006 press conference at http://www.cfids.org/sparkcfs/press-conference.asp and the media coverage it has generated at http://www.cfids.org/sparkcfs/media-coverage.asp.
To help improve the public’s understanding of CFIDS, the Association provides thousands of pages of resource material, story ideas and coordinates interviews for numerous media outlets. "O" magazine, North Carolina Public Radio, AMA News, Associated Press, Glamour, Prevention, Vogue, AWARE Talk Radio, United Press International, the New York Times, the Los Angeles Times and the San Francisco Chronicle are just a few of the hundreds of print and broadcast outlets that have recently covered CFIDS and PWCs.
The Association and the Centers for Disease Control and Prevention (CDC) partner to improve health care providers’ knowledge of CFIDS. We created a provider-oriented website where medical professionals can access a web-based curriculum, CFS: Diagnosis and Management, designed to enhance their understanding of CFIDS, promote earlier detection and diagnosis and improve illness management. With full accreditation from CDC, the program offers free continuing education credits (CME, CNE and CEU) to providers who successfully complete the course.
Materials have been adapted for behavioral health and rehabilitation professionals, including physical and occupational therapists and an online CE course can be found at http://www.cfids.org/treatcfs/onlinece-pahp-about.asp.
To further educate those on the front lines of patient care, the Association participates in numerous national and regional professional conferences, interacting with health care professional from multiple disciplines, answering their questions and stimulating interest in CFIDS and its complexities.
Public Policy Program
Since 1992, the CFIDS Association has maintained a consistent presence in Washington, DC, representing the policy concerns and medical research interests of people with CFIDS to policy makers and agency officials.
The goal of our public policy program is to shift the burden of funding promising CFIDS research from patients to the federal government, to ensure accountability for federal CFIDS programs and to increase grassroots involvement in the process of developing federal health policy relating to CFIDS.
The most visible example of efforts to hold the government accountable for its response to CFIDS came with a 1999 report from the General Accounting Office verifying that the Centers for Disease Control and Prevention (CDC) had misused $12.9 million directed to CFIDS research between fiscal years 1995 and 1998. The investigation validated the Association's long-standing allegation that the federal government had not made a serious investment in CFIDS research. The subsequent restoration of the full $12.9 million to the CDC's CFS research program resulted directly from vigorous Association-led public policy efforts. Today, the CDC’s CFIDS research program is widely regarded as the most comprehensive CFIDS program in the world, largely as a result of the Association’s influence of funding priorities and vigilance over program activities.
The Association's public policy program has made substantial progress in other areas as well. In 1999, the Social Security Administration issued a ruling (SSR 99-2p) that stated unequivocally that CFS can be a disabling impairment for which patients are entitled to federal disability benefits. A federal CFS Advisory Committee has existed for the past 10 years (in various formats) as a result of the Association's advocacy. The committee provides guidance to the Secretary for Health on policy matters related to research and patient care.
The primary issue shaping our current advocacy agenda has been the erosion of CFIDS research at the National Institutes of Health (NIH). In response to a two-year campaign by the Association (including discussions with agency representatives, two Freedom of Information Act requests and a personal meeting with NIH Director Dr. Elias Zerhouni) urging NIH to make good on its commitment to fund more CFIDS research, the agency finally issued a $4 million request for applications (RFA) for CFIDS in July 2005. Seven new research awards were announced on October 30, 2006 for a total of $4 million in new CFIDS research funds.
The support of concerned CFIDS advocates is a vital element of the Association's public policy program. Through our online Grassroots Action Center and annual Lobby Day activities, activists have opportunities to make their voices heard on Capitol Hill.
Research Program
The CFIDS Association is the leading charitable organization dedicated to biomedical research on CFIDS. We have invested over $4.7 million in CFIDS research efforts, second only to the federal government. The Association aggressively pursues an entrepreneurial research strategy, funding innovative, scientifically sound pilot studies that often lack the preliminary data required by more traditional grant sources.
Beginning with our first research grant to in 1987, the Association has invested in studies to determine the cause(s) of CFIDS, its prevalence in the general population, identify biological markers for the illness and uncover potentially effective treatments. These studies have led to promising new advances in understanding the possible role of viruses, defining immune abnormalities, and identifying genetic factors.
The Association conducted a two-year Research Symposia series, part of a comprehensive plan to strengthen the CFIDS research effort. Leading researchers from the fields of autonomic nervous system function, endocrinology, epidemiology, immunology, pain and pediatrics were involved in the symposia series, which focused on the autonomic nervous system and orthostatic intolerance, the neuroendocrine system and the immune system. A series of papers published in the peer-reviewed journal Neuroimmune, modulation documented each panel's assessment of the science and most promising avenues of research.
The Association also works to improve the quantity and quality of CFIDS research being undertakento attract talented investigators to the field of CFIDS science, and expand the number of dedicated clinicians providing care to CFIDS patients.
The Association is currently funding the following studies:
Studies on the Etiology of CFS; Ronald Glaser, PhD, Ohio State University
HERV-K18 env as a risk factor for CFIDS: Brigitte Huber, PhD, Tufts University School of Medicine
Mechanisms of Cytotoxic Cell Dysfunction in CFS; Nancy Klimas, MD, University of Miami, Miami, FL
1H MRS Neurometabolites as Diagnostic Markers for Chronic Fatigue Syndrome: Comparison with Major Depressive Disorder and Healthy Volunteers; Dikoma C. Shungu, PhD, Weill Medical College of Cornell University, New York, NY
Using an Exercise Challenge to Investigate the Pathophysiology of CFIDS; J. Mark VanNess, PhD, and Christopher Snell, PhD,
University of the Pacific, Stockton, CA
Click here for full descriptions of these research projects.
Related Information
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