The CFIDS Association of America was founded in Charlotte, North Carolina in 1987 by Marc Iverson, who became abruptly ill with CFIDS on October 26, 1979. Iverson and a handful of committed volunteers began working together to hold local support group meetings and publish a monthly newsletter, the CFIDS Chronicle. In the first year of activity, the Association (then the Charlotte CEBV Association) made its first research grant, beginning a tradition of supporting promising CFIDS research studies.
In March 1988, a local United Way agency provided the Association (then the Charlotte CFIDS Association) with office space and extension of its non-profit status for fund-raising purposes. The first staff member was hired in January 1989 and the first office space leased in spring 1990, at which time the Association dropped “Charlotte” from its name, becoming The CFIDS Association.
Association-funded research into a novel retrovirus believed to be associated with CFIDS captured media attention and the hopes of CFIDS patients in September 1990. A Newsweek cover story on CFS and an Association-sponsored research conference in November 1990 generated further momentum for education and research efforts.
By early 1991 the staff and programs had grown beyond the ability of management by ill volunteers and executive director Kim (Kenney) McCleary was hired. Operations were made more routine, the research program was formalized, and the IRS granted the Association permanent 501(c)(3) non-profit status. In October 1991, Portland’s CFIDS Society International, announced it was closing; two CFIDS advocacy organizations also ceased operations; and in early 1992 the Association assumed responsibility for national advocacy efforts. Lobbyist Tom Sheridan was hired to provide strategic guidance and a Washington, D.C. presence. The Association’s first lobby day was held in September 1992 to influence adoption of CFIDS-specific language in health appropriations and authorization bills.
In January 1993, the Association adopted a new logo and added “of America” to its name to reflect its growing national status. That year it launched a program to involve grassroots activists in D.C.-based efforts and flexed its new political muscle at public meetings held at the Centers for Disease Control and Prevention (CDC). National attention to the disease was heightened in February 1994 when Ann Landers’ syndicated column referred 50,000 information requests to the Association. That spring Kenney was appointed as a consultant to the federal CFS advisory committee and the Association hosted its third lobby day. By this time the Chronicle was widely recognized as the nation’s largest, most comprehensive and reliable source of CFIDS information. Research was broadened to support pilot studies of prevalence and immune function. By year’s end, the Association’s Board of Directors was expanded to reflect national representation.
1995 brought research reports linking CFIDS to a blood pressure regulation disorder called neurally mediated hypotension, generating media attention and new research opportunities. The Association worked to better serve young persons with CFIDS and their families, added congressional briefings to its fourth annual lobby day event, created the CFIDS Public Relations Team to encourage accurate media reports about CFIDS and hosted a patient conference in Charlotte.
In 1996, Kenney participated in a peer-review of the CDC’s CFS research program and Social Security officials admitted that some persons disabled by CFIDS had been improperly denied disability benefits. Association-funded research on a defect in one of the body’s antiviral pathways attracted considerable patient interest and funding from the National Institutes of Health. The government’s new CFS advisory committee, the CFS Coordinating Committee (CFSCC), met for the first time in 1997 after Kenney was appointed to serve a four-year term. Chicago was the site for the Association’s second patient conference, held in October.
In July 1998 the Association provided assistance to the CDC’s lead CFS researcher when he presented evidence of the agency’s misspending of CFS research funds. Media and political pressure forced CDC to order an audit of the records. CFSCC meetings that year focused attention on this issue, name change efforts, and the need for unified national CFIDS priorities. The Association’s research program supported 11 studies, representing a range of research disciplines. A year-end development report provided the basis for changes to governance and management activities to further strengthen the Association.
1999’s strategic plan focused on “mainstreaming CFIDS.” After months of working with the Social Security Administration, policy ruling 99-2p recognized CFS as a disabling condition, reducing some barriers to federal disability benefits for persons disabled by CFIDS. The release of a report from the U.S. Inspector General’s office documented that more than half the CDC’s reported CFS spending was diverted to other programs; the report formed the basis of the Association’s fight to recover the $12.9 million in misspent funds for CFS research and education activities. An October 1999 meeting with CDC Director Dr. Jeffrey Koplan marked an important turning point in the agency’s attention to CFS. The addition of a full-time public relations professional to the staff helped generate considerable media attention to the CDC scandal and other CFIDS-related issues.
In 2000, the CFS Research Review, a newsletter for health care providers and Association members, was launched and received overwhelming positive response. The Association hosted its first research symposium on the topic of dysautonomia in CFS as part of a comprehensive effort to strengthen the CFS research effort. In partnership with the Illinois Area Health Education Center, the Association began efforts to educate more health care providers about CFIDS. Hiring the staff’s first medical professional was an important step towards improving providers’ knowledge of how to detect, diagnose and treat CFIDS. Development activities capitalized on strengthened relationships between board members and benefactors and a series of Leadership Meetings enabled Association staff to present future plans to donors capable of fueling progress.
In 2001, the Association worked vigorously to reach more of the millions of people whose lives have been affected by CFIDS. Continuation of the Association’s CFS research symposia series and re-opening of the Association’s research grants program generated momentum in research. Efforts to recruit new Congressional champions gathered steam to compensate for the retirement of long-time champion Representative John Porter of Illinois. An all-new website was launched after many months of content creation and planning. On September 10, President & CEO Kim Kenney was recognized by Redbook as one of 12 “Mothers and Shakers” for her contributions to health care; in the months that followed the 9-11 attacks on New York and the Pentagon, the Association re-dedicated itself to meeting the needs of PWCs in an increasingly complex world.
2002 marked another year of challenge and change as a stagnant economy and shifting public health and political priorities intensified competition for scarce resources. Jamie Davis was promoted to Chief Operating Officer to better integrate development with all Association efforts and to share leadership responsibilities with the Chairman of the Board and President/CEO. Three new research projects were funded by the Association after implementing a more rigorous process for reviewing applications in the fall of 2001. Public policy activities focused on boosting an anemic CFS research portfolio at NIH and building support for CDC’s CFS program beyond the agreed-upon restitution period. The Association secured a five-year, $2.8 million contract with CDC to broaden provider education activities and at year-end an on-line CME course went “live” on the Association’s website. Mid-year staffing changes necessitated by sluggish unrestricted contributions forced the contraction of several Association programs, including the CFIDS Support Network and public relations work conducted by an outside firm. A new Chronicle feature, Snapshots of CFIDS, was added to pay tribute to the personal stories and interests of PWCs, while a new monthly electronic newsletter, CFIDSLink, was launched to provide more frequent contact with members and donors.
2003 became the year that Seabiscuit brought considerable attention to CFIDS through author Laura Hillenbrand’s poignant disclosure of her intense struggle with the illness. Media reports about her best-selling book and the Gary Ross film gave her numerous opportunities to tell her CFIDS story. A haunting essay she wrote for the New Yorker was published July 7 and went on to win the National Magazine Award. She was honored by the Association at two July events, an intimate “Author Tea” and a benefit screening of the film, both held in her hometown of Washington, DC. These events gave the Association the opportunity to cultivate individual and corporate gifts and to showcase the Association’s work before a broader audience. The Association also expanded provider education efforts, exhibiting at seven national medical conferences, developing a “pocket” resource guide for health care providers and assisting peer trainers deliver presentations about CFIDS to others in their profession. A Sept. 18 Lobby Day attracted over a hundred registrants, but the threat of Hurricane Isabel closed government offices that day. Advocates spent time writing letters to members of Congress and sharing experiences with one another. The government’s CFS Advisory Committee met for the first time on Sept. 29 and again on Dec. 8, with 11 members appointed by Secretary for Health Tommy Thompson discussing research, education, the name change and other priorities. New features were added to the Association’s web site and readership of CFIDS Link grew to nearly 16,000.
An Oscar Night benefit in New York got 2004 off to a festive start, when 60 donors and Association friends gathered to celebrate “Best Film” nominee “Seabiscuit.” In April, the Association launched its Grassroots Action Center, a web-based tool that facilitates targeted communication from individual advocates to elected representatives and media. A five-week campaign generated over 10,000 messages to Congress, public health officials and media professionals. The spring issue of the CFIDS Chronicle debuted a new format and several new features, and was met with high praise from members and donors. Four new research grants were announced in June, providing total funding of $280,000 in support of pilot studies. After nearly a year of negotiating and planning, the Association secured a contract with the Centers for Disease Control to develop and launch a national public awareness campaign. A reorganization of the agency’s structure and administration of this contract have delayed implementation, although groundwork and formative research are currently under way.
In 2005, the Board’s Long Range Strategic Planning Committee met twice monthly to develop a 10-year plan to achieve the mission of conquering CFIDS. A detailed survey of donors and members generated a 25 percent response, yielding extremely valuable information about supporters’ priorities and perceptions – answers that will help shape programs and services over the next several years. A new regional seminar series, the “kNOw MORE” Education and Empowerment program, was launched to meet a number of education and service objectives. The first program was held June 25 in Reston, Virginia, with speakers Lucinda Bateman, MD and Staci Stevens, MA, and was a great success. A second program, held in Charlotte, North Carolina, on November 14, featured noted researchers Nancy Klimas, MD and Peter Rowe, MD. The Association also conducted a successful lobby day with 75 participants on International CFIDS Awareness Day, May 12, yielding several positive outcomes. An intensive review of the Association’s research program was commenced and a long-awaited Request for Applications, issued by the National Institutes of Health with a $4 million set aside for successful applicants, was widely distributed by the Association to researchers working on CFIDS and in related fields. The CFIDS Association was awarded a multi-year contract by the CDC to develop the first national CFS awareness campaign. Work on the formative research, including focus groups of health care professionals, CFS patients and the public, began in the fall with help from nationally recognized firms Fleishman Hillard and GMMB. The first CFS Grand Rounds program, supported by the CDC, was held at University of California at Davis and the provider education exhibit was featured at national conferences of health care professionals including the American College of Physicians, the American Academy of Physician Assistants, the American Academy of Nurse Practitioners, the American Occupational Therapy Association and several Pri-Med conferences. By year-end, the Association was preparing to send a special double issue of the CFIDS Chronicle to members, donors and an expanded list of researchers, medical professionals, media and lawmakers. The issue presented a recap of the science of CFS, featuring articles by researchers, physicians and patients from around the globe.
2006 began with announcements about the national CFS awareness campaign, dubbed “Spark CFS!” Development of the various campaign components, including print ads, public service announcements for television and radio, web site materials and a traveling portrait exhibit, moved into high gear. The campaign launched on June 7 as the first ads appeared in July issues of Ladies’ Home Journal and Better Homes and Gardens. The Association hosted its 14th annual CFIDS Lobby Day on May 8-9 with more than 70 participants who met with members of Congress and staff from more than 80 offices. The third “kNOw MORE” program was held in Akron, Ohio, on May 20, with noted speakers David Bell, MD, and Patricia Fennell, MSW. Association support for four new research projects totaling $250,000 began in late spring and the Association sponsored two scientific meetings, an international conference on Human Herpesvirus 6 (hosted by the HHV6 Foundation) held April 29-May 3 in Barcelona, and the Critical Assessment of Microarray Data Analysis (CAMDA) challenge hosted by Duke University. Both meetings fostered new insights into CFIDS. Record-setting attendance at the Association’s “kNOw MORE” program on October 28 in Sacramento, occurred just a week before a November 3 press conference at the National Press Club featuring CDC director Dr. Julie Gerberding and Assistant Secretary for Health John Agwunobi. This event was a joint announcement by the Association and CDC of the awareness campaign and generated more than 200 media reports, including coverage by NBC Nightly News, National Public Radio, American Medical News, US News & World Report and other top publications and broadcasts. 2006 will be recorded as a landmark year in research and awareness.