Organizations Making History: Part II
As the CFIDS Association marks 20 years of service to the CFS community, it honors the many other organizations making a difference in the lives of people with CFS and related disorders. Here are profiles of four organizations that have shaped, or are shaping, our collective history. Watch the CFIDS Chronicle and CFIDSLink for more profiles of organizations, events and people making CFS history.
New Jersey – Small, but Mighty
For more than 12 years, the New Jersey CFS Association has been a force regionally and nationally, providing some of the best educational programming and patient support services available anywhere. Jon Sterling was the first to preside over this organization, formed by support group leaders who led groups around the compact but populous state. NJCFSA’s board has provided important state leadership and has also proven to be a training ground for leaders with national impact. Jon and fellow Board member Ken Friedman, PhD, both served on the federal CFS Advisory Committee; Jon chaired the CFIDS Association’s Board of Directors from 2001-2004 and fellow director Barbara Comerford also served on the CFIDS Association’s Board. NJCFSA trustee Jacqueline Niederle is one of the most experienced Lobby Day advocates in the country, having attended most of the 15 annual events; Jackie is also one of the “Faces of CFS” featured in the national awareness campaign’s traveling exhibit. Brian Bernard is another of the “Faces of CFS” – his mother, Dr. Donnica Moore, currently serves on the NJCFSA Board. Both just appeared on a nationally syndicated Fox morning show.
At the state level, NJCFSA maintains its network of support groups, a lending library of books, tapes and CDs, professional referrals to physicians and attorneys, and a phone list for individual peer support. More visible are the twice yearly conferences that feature nationally recognized speakers on research, treatment and advocacy. NJCFSA partnered with the CFIDS Association for an Education and Empowerment seminar in March 2007. The organization also publishes a newsletter providing timely updates to members.
Historically, NJCFSA may be best known for a unique contribution made to medical education when it secured support—and $95,000 in funding—from the state to produce a consensus manual on the diagnosis and treatment of CFS that was distributed in 2002 to all physicians in the state through the NJ Academy of Medicine. The group has also been at the forefront of training professionals about pediatric CFS, exhibiting annually at conferences of school nurses and educators. A yearly high school scholarship also helps promote the challenges faced by students with CFS.
So from this small state come big contributions, making New Jersey a veritable hub of CFS activity!
Getting Traction in the Rockies
Mike Munoz, president of the Rocky Mountain CFIDS/FMS Association, has racked up frequent flier miles making connections and a name for himself over the past two years. Although the group has existed under various names since 1985, Mike has been reaching out to bring road-tested ideas and services back to fellow CFIDS and FM patients in Denver and around the state.
The monthly support group meetings begun in the mid-1980s by Priscilla Finnell, Sandra Bunny and Cheryl Beatrice Repko continue today. They feature a combination of local speakers and DVD presentations from national experts. In October, they will host an Education & Empowerment seminar with the CFIDS Association. Summer picnics and holiday luncheons provide additional social gatherings for group members.
Their website houses information about CFIDS and fibromyalgia, archives of past events and links to a multitude of resources. A new electronic newsletter, In Focus e-news, provides regular updates to subscribers about a variety of topics.
This group, with a long tradition and bright future, is sure to make even more impact as networking and partnerships with local, national and regional organizations begin to take hold.
Young Allies with a Cause
When it comes to pediatric CFS, the kids themselves played a historic role in gaining recognition and spurring research.
At that time, awareness of pediatric CFS was nearly nonexistent despite the fact that many of the patients in the well-known Lyndonville, NY, outbreak were children. Some people weren’t even sure children could have CFS. It didn’t occur to most CFS researchers to include pediatric cohorts in their studies, and even the CDC, who had pediatric data from their Wichita prevalence study, didn’t initially analyze it. That is, not until the young people themselves stepped up and made the push to be counted.
In 1994, Rebecca Moore, just 17 years old at the time, launched the Youth Campaign for CFIDS Awareness with a letter-writing campaign to President Clinton, asking for help for young people with the illness. According to Moore, “There were many people in the CFS community who’d never spoken to kids with CFS and felt it was a rare problem. If the CFS community wasn’t attuned to pediatric CFS, you know the rest of the world certainly wasn’t.”
The campaign took off under Moore’s persistence, and in 1995 came under the CFIDS Association’s umbrella as the CFIDS Youth Alliance. The group produced a newsletter, ran websites, chat rooms and a pen-pal program, managed advocacy efforts and challenged the medical establishment and government officials.
In April 1996, more than 100 members of the CFIDS Youth Alliance and their supporters gathered in Washington, D.C., to attend a federal CFS Interagency Coordinating Committee meeting (a precursor to the current CFSAC). Six youth and parents provided testimony to the committee, shining a spotlight on the unique issues facing young people with CFS. Moore went on to testify at the CFIDS Association’s congressional briefings, and the Alliance came to Washington again the following year as part of the Association’s Lobby Day event.
These efforts led directly to scientific meetings about pediatric CFS held by the CDC, the interagency committee and the National Institutes of Health (NIH), including a day-long “State of the Art Workshop on CFS Adolescents.”
Though the Alliance ceased to exist as a distinct organization in 1998—citing the difficulty of engaging young people, most of whom were too sick to help run the organization—the effects of the Alliance’s work can still be felt even a decade later. Just this year, the International Association of CFS/ME (IACFS/ME) released a pediatric-specific case definition for CFS, an advance that may not have happened if not for the early visibility and pressure achieved by the CFIDS Youth Alliance.
Science from the East
CFS is being studied in many countries across the globe, but perhaps nowhere as intensively as in Japan in recent years. Japan is tackling fatigue as a national priority with extensive economic implications. As a result, Japanese research teams led by Hirohito Kuratsune, Yasuyoshi Watanabe and their dedicated colleagues have mounted a virtual scientific onslaught—studying the brain, the blood, genes, immune function, stress factors and treatment in an attempt to piece together the CFS puzzle.
The progress is impressive. Japanese brain imaging studies have documented gray matter volume reduction and decreased uptake of serotonin. Their cognitive and exercise testing studies have uncovered problems in CFS patients’ ability to process information and energy, respectively. They’ve also made progress singling out gene expression and serum differences that accurately identify CFS patients. In June 2007, results from 15 of these studies were released in the Japanese Journal of Clinical Medicine Nippon Rinsho. (See “CFS Research from Japan” in the July CFIDSLink.)
This multisystem research has led the Japanese team to hypothesize a complex but cohesive model for the mechanisms behind CFS. They suggest that genetic background and psychosocial stress create predisposing factors for the illness. When subsequently triggered by certain viral, bacterial or environmental agents, the central nervous system, immune system and HPA axis generate a cascade of negative effects including hormone dysregulation, brain dysfunction, abnormal cytokine production and other abnormalities leading to the symptoms commonly experienced by people with the illness.
Links to organizations in this article:
New Jersey CFS Association www.njcfsa.org
Rocky Mountain CFS Association www.rmcfa.org
Japanese research team www.www.cfids.org/cfidslink/2007/070503.asp
The summer 2007 CFIDS Chronicle features profiles of seven more organizations making history, as the CFIDS Association of America continues its commemoration of 20 years of service to the CFS community. Future issues of CFIDSLink will extend this article series.