A profile of leading patient advocate Yvonne Keeny – part of a series highlighting the accomplishments of ME/CFS Fair Name Implementation Committee (FNIC) members
After suffering with Fibromyalgia and ME/CFS for 13 years, Yvonne Keeny recovered, primarily by following a program of nutrition combined with other alternative treatments. Wanting to help others still suffering with these illnesses, she founded the Fibromyalgia Coalition International (FCI), a nonprofit that offers an international support group network, an annual awareness conference, and Fibromyalgia Alternative News magazine. Under Yvonne’s leadership, FCI has responded to thousands of FM and ME/CFS patients seeking information and resources.
Yvonne Keeny’s story starts like that of just about everyone else who has been diagnosed with Fibromyalgia or ME/CFS. She had been perfectly healthy her entire life until 1984 when something went terribly wrong. “I started having widespread pain, fatigue, digestive problems, sleep problems, anxiety, brain fog, and short-term memory loss,” she said. She found it interesting, and more than a little frustrating, that she could remember things from a long time ago but couldn’t remember to take her keys out of the car. She laughed as she recalled, “I locked my keys in the car so many times, I finally got embarrassed and went and had another set of keys made.”
Her search to find out what was wrong was also sadly typical – going to several different doctors but getting no answers. Then one day, as she was looking through a book on arthritis, she came across an illustration of tender points and a one-page description of Fibromyalgia. Although she had never heard of it, she said, “That illustration looked more like me than my most recent snapshot.” She immediately made an appointment with her doctor. After running a number of tests to rule out other diseases, he diagnosed her with Fibromyalgia.
Yvonne spent the next few years on a combination of pain medications, muscle relaxants, antidepressants and antacids. She felt she was waging a losing battle to control her illness. Even though the medications took the edge off, they didn’t stop the pain and her condition continued to worsen. Then one day, Yvonne picked up a Physician’s Desk Reference and began reading about one of the medications she was taking. When she saw that one of the side effects listed was stroke, she decided there had to be a better way. She said, “If I’m going to have a stroke, I’m going to have it naturally. I’m not going to buy it at the drugstore and pay tax on it.”
From that point on, Yvonne was determined to find some way to battle her illnesses without wreaking havoc on her body. Since she didn’t have Internet access at the time, she went to the public library and began searching. When she keyed in “Fibromyalgia,” the first thing that came up was a story about a 42-year-old woman from Massachusetts who had chosen the Dr. Kevorkian route. “I could understand why she chose that route,” said Yvonne, “but I thought, ‘I’m never going to let this happen to me. I’m going to find or make a way to get better.’”
As Yvonne intensified her research, she discovered there were several alternative methods that had been effective for FM and ME/CFS patients. “Once I changed my approach from ‘cope’ to ‘hope,’ information seemed to start jumping out in front of me,” she recalled. “One day I was in the grocery store and right before my eyes in the rack was the Alternative Medicine magazine. On the front in bold headlines was “26 Doctors Tell You How They Reverse Fibromyalgia.” Of course I grabbed it, took it home and started reading.”
Natural Road to Recovery
After 13 years of suffering with FM and ME/CFS, on April 1, 1997, Yvonne began what she calls her “Natural Road to Recovery.” She learned there were certain foods she needed to avoid: sugar, white flour, alcoholic beverages, carbonated beverages, coffee and artificial sweeteners. Taking supplements and doing stretching exercises became part of her routine. Very gradually, she began cutting down the dosages and eventually getting off her medications one by one. Slowly, she began to feel better.
What was to ultimately be the key that unlocked the door to full recovery for Yvonne came when she went to a presentation on FM given by Mary Moeller, LPN. There Yvonne learned about the yeast connection. Moeller said that some people with these illnesses have a systemic yeast overgrowth but don’t know it. Yvonne called the laboratory Moeller recommended and found a doctor who would work with her. When she tested positive for yeast overgrowth, he put her on an appropriate medication. At the same time, he tested her for food sensitivities, told her which foods to avoid, and set her up on a rotation diet to help her prevent becoming sensitive to additional foods. Within six weeks, Yvonne was pain free.
Helping Others Find Alternatives
That was 10 years ago. Today Yvonne lives a full, energetic and complete life. At this point, many people would happily go back to living the life they thought they had lost – but not Yvonne. Instead, she dedicated herself to helping others who are still suffering. “My illness brought a special understanding and empathy for people who are suffering with FM and ME/CFS,” she said. “I know the difficulties of day-to-day living.” She felt if she could find a way to recover, perhaps she could help others find their own road to recovery as well.
In January 1998, Yvonne started a support group and named it the “Getting Well Support Group” because she wanted the focus to be on getting well. In addition to offering the support and acceptance that is so important, the group also provides information about natural therapies that have proven to be effective and other things patients can do to help themselves.
Founding Fibromyalgia Coalition International
By 2000, what started as a small support group had quickly grown to more than 70 members and Yvonne was getting calls from people across the country. Her pastor suggested she form a nonprofit organization in order to reach more people. That was the beginning of the Fibromyalgia Coalition International (FCI) – http://www.fibrocoalition.org. The support network’s stated mission is to give hope to everyone suffering with FM and ME/CFS through extensive research and reporting of natural, proven and effective therapies that focus on the root causes.
FCI publishes a quarterly magazine that provides objective, in-depth reporting and helps readers find resources on natural solutions for FM and ME/CFS. Although most articles are written by healthcare providers, Yvonne also likes to include an article in each issue by a patient who has recovered so people will know she’s not the only success story. In addition to the magazine, FCI hosts a conference in Kansas City each year that draws 250 to 300 people.
Because FCI promotes natural and alternative therapies, they don’t receive money from the drug companies as many other health-related nonprofits do. Therefore, they operate on a shoestring. Most of the work done by and for FCI is done on a volunteer basis. Yvonne clarified that she is not totally opposed to drugs, acknowledging that there are times when they are necessary and save lives. But she feels strongly that continually feeding patients pain pills and antidepressants for FM and ME/CFS is not the long-term answer.
ME/CFS Fair Name Implementation Committee
Yvonne considers it a privilege to be included on the ME/CFS Fair Name Implementation Committee. She said, “The term [Chronic Fatigue Syndrome] and its vague definitions are trivializing and hurtful to patients suffering with this debilitating illness. Chronic Fatigue Syndrome does not describe any disease process, only symptoms. Patients deserve a proper medical diagnosis.”
She also expressed her belief that the poor name has resulted in a loss of funding for effective research and treatment. “Much funding has been wasted on fatigue and behavioral studies despite years of increasing scientific evidence for the seriousness of the illness. I would like to see research funding to identify and treat the root cause or causes of the illness. As with anything else, we can’t fix the problem until we know what’s causing it. Effective treatment and prevention will come about only when we have an appropriate name.”
*Karen Lee Richards is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral’s ChronicPainConnection (http://www.chronicpainconnection.com). Karen is co-founder of the National Fibromyalgia Association (NFA) and was Executive Editor of Fibromyalgia AWARE magazine for four years.