I suffered with fibromyalgia, chronic fatigue syndrome and related illnesses for over 13 years. I learned firsthand what it is like to live with chronic pain and fatigue, lack of sleep and the uncertainty of knowing if I would feel like getting out of bed the next morning!
After my recovery in 1997, I wanted to know how I could help ensure a better future for others who are suffering with this mysterious illness — one that we are told has no cure — we just have to learn to live with it. So I started a support group and soon, more than 70 people were attending the meetings.
The Fibromyalgia Coalition International (FCI) evolved from this support group. There had to be a way to reach more people. The answer, I found, is advocacy — reaching out on behalf of those with fibromyalgia. I consider it a noble calling.
Many people think that advocacy and lobbying are synonymous, and I was one of them. However, I soon learned that lobbying is a form of advocacy, and that there are many ways to advocate. Holding an event, seeking state and local proclamations, participating in walks, raising funds for research, and distributing information are all forms of advocacy.
Advocacy involves promoting awareness of the disease, its diagnosis, and its treatment. People with fibromyalgia need to know that their illness is real, that there are treatment options, and that there is real hope!
Since its founding in 2000, the Fibromyalgia Coalition International has participated in many advocacy events. A few are listed here:
The Million Letter Campaign organized by Dominie Bush in 2005. Dozens of organizations wrote letters to senators, congressmen, and the major television networks, plus First Lady Laura Bush, Oprah Winfrey, Dr. Phil, Barbara Walters, and the Secretary of the U.S. Department of Health & Human Services, Mike Leavitt.
The Campaign for a Fair Name promoted by Rich Carson, ProHealth founder and ME/CFS patient. The goal was to replace the name “Chronic Fatigue Syndrome” with a fair and accurate name that validates the seriousness of this often-disabling disease.
Awareness Day Conferences: In 2001, more than 240 people attended FCI’s first conference at the Kansas City Airport Marriott. Speakers included Dr. Joseph Mercola, Dr. Majid Ali, Mary Moeller, LPN, former FM patient (author of Fibromyalgia Cookbook: A Daily Guide To Becoming Healthy Again), and Claire Musickant, former FM patient (author of Fibromyalgia: My Journey to Wellness).
The first conference was so successful that the FCI Board of Directors decided to host an annual event. It turned out to be the first of 16 annual conferences. Thousands of fibromyalgia patients, their family members, friends and healthcare providers have attended.
Subsequent conference speakers include MDs, DOs, NMDs, DCs, a disability attorney, massage therapist, myofascial therapist, fibromyalgia patients and other professionals.
CEUs for Healthcare Professionals: FCI conferences included continuing education units for nurses and other healthcare professionals, encouraging them to look for causes of health issues from a holistic point of view, understanding that when one part of your body is not functioning effectively, it can affect all of your body systems — physical, mental, and emotional. Hundreds of healthcare providers have received CEUs at these events.
Documentary: In May 2002, FCI sponsored “I Remember Me,” at the Rio Theater in Overland Park, Kansas. “I Remember Me” is a biographical documentary about chronic fatigue syndrome, produced in the United States by Kim A. Snyder. The film attempts to show just how devastating the illness can be.
Lobbying: In 2006, I shared the fibromyalgia community’s concerns with the Missouri House of Representatives at a hearing in Jefferson City. The bill before the Missouri legislature was designed to put state agencies to work on physician education, medication cost relief, and more.
Media: FCI has provided information about fibromyalgia and chronic fatigue syndrome to all major newspapers in Kansas and Missouri. ProHealth, Healthy Living Magazine, Our Health Matters, To Your Health, and The Best Times have published articles and interviewed me to help raise awareness.
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An FCI member from St. Joseph and I provided information for a full-page article in the St. Joseph (Missouri) News-Press. I have also been a guest on various radio talk programs including local stations KCUR and KKFI where I shared information about these illnesses.
Fibromyalgia Magazine: In April 2007, FCI upgraded its newsletter to a magazine format and named it Fibromyalgia Solutions. The magazine was mailed to FCI members throughout the U.S. and six foreign countries for 10 years.
Fibromyalgia Awareness Day Proclamations: In 2003, Governor Kathleen Sebelius issued a proclamation declaring May 12 Fibromyalgia Awareness Day in the state of Kansas. The FCI staff, MDs, LPNs, and fibromyalgia patients attended the official signing in Topeka.
In 2008, Mayor Ken Sissom issued a proclamation declaring May 12 Fibromyalgia Awareness Day in the city of Merriam, Kansas. FCI hosted an open house and signing ceremony at their headquarters for this event attended by over 40 people.
Run/Walks: In 2004 and 2005, Lisa Wiegert of St. Louis hosted two run/walks in memory of her brother who had suffered with fibromyalgia. I was the keynote speaker at both events. FCI also hosted several run/walks in the Kansas City area.
Support Group Meetings: Various FCI members and I have conducted support group meetings in the Kansas City area for the past 20 years. FCI provides ongoing support, encouragement and information for established as well as new support groups worldwide. FCI also offers a Leader’s Guide in their online store.
Workshops: I have spoken at numerous workshops throughout the nation including in New York, Florida, Texas, California, Missouri, and Kansas. I have conveyed information and answered questions for thousands of people!
Much work has been done.
Much remains to be done.
FCI fights for the rights of fibromyalgia patients by advocating for awareness, for research to identify causes, and for better public policy. FCI looks forward to carrying the torch as it works toward a world without fibromyalgia.
That said, however, I personally am not in a position to take this all the way to fruition. What FCI does have as a nonprofit organization is the ability to find a leader and stand behind him or her until the task does come to fruition. We invite you to join FCI’s efforts to make this vision a reality!
Thanks to everyone who advocates for fibromyalgia awareness! Together, we make a difference!
If you would like share your ideas and/or make fibromyalgia a priority with health officials and lawmakers, please donate at www.fibrocoalition.org.
Yvonne Keeny is founder and executive director of the Fibromyalgia Coalition International, a nonprofit organization headquartered in Overland Park, Kansas and a former fibromyalgia/CFS patient. She is also a 19-year support group leader, author of The Support Group Leader’s Guide, an accomplished speaker, a graduate of the Institute of Integrative Nutrition, a certified health coach, and an advocate for people with fibromyalgia.