Silently suffering
by Jessica Garcia
Mar 11, 2009 | 1203 views | 0 0 comments | 4 4 recommendations | email to a friend | print
Tribune/Dan McGee - For the past 23 years, Kelley Mooneyham, a Reno resident, has suffered from chronic fatigue syndrome. As a result, she s usually looking out at the world from her small world, the bedroom in her house.
Tribune/Dan McGee - For the past 23 years, Kelley Mooneyham, a Reno resident, has suffered from chronic fatigue syndrome. As a result, she's usually looking out at the world from her small world, the bedroom in her house.
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As a 17-year-old freshman at the University of the Pacific, Kelley Mooneyham dreamt of playing the lead female roles of Eva Perón in "Evita" and Christine Daaé in "Phantom of the Opera."

A severe case of mononucleosis and its lifelong effects, however, quickly obliterated her hopes of ever performing in Broadway musicals. Twenty-three years after her bout with mono, instead of using her voice on a stage, Mooneyham spends the majority of her day in bed, struggling with the resulting chronic fatigue and rarely having an opportunity to enjoy leisure activities or a social life.

"I lay here ... and have no central energy source," Mooneyham said, mostly resting on her bed or a couch during an interview. "The things you use to get up in the morning — take a shower, get dressed — those little things are huge to me."

Chronic fatigue syndrome (CFS), often described as an invisible illness because there are no outward signs of ailment, is the focus of a traveling photo exhibit, created by the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, on display this week at Meadowood Mall near the JCPenney seating area.

With more than 4 million Americans, or fewer than 20 percent, who have been officially diagnosed with chronic fatigue, CFIDS wants to drive home to the public the point that anyone can have it without looking like they do or even being aware of it.

Mooneyham, 40, lost not only her college aspirations but 23 years of contribution to the workforce, even though she appears healthy and felt an unusual boost of adrenaline for an interview with the Tribune. However, on most days, many of Mooneyham's abilities to carry out simple day-to-day tasks are diminished and she remains bedridden for a large portion of her day with chronic fatigue.

The Reno resident describes what she lives with every day as a "bonecrushing weakness."

"For a person who's busy and all action, action, action, this disease is just crippling," she said. "There are so many people who silently suffer. No one knows I lay here in my bed; none of my neighbors know."

The debate of CFS's existence is the first battle to overcome, according to CFIDS president Kimberly McCleary.

"One service we've tried to provide is making sure patients and caregivers and medical providers have access to the latest and most credible information," McCleary said. "It rests on 'credible' ... to make them feel like they're not going crazy. They think this isn't happening to anyone else."

McCleary doesn't have CFS nor did she know anyone who had it when she first became interested in it. She said the treatment of the syndrome by the media and the government made her passionate about the cause.

CFS causes prolonged, debilitating fatigue that substantially reduces a person's livelihood and daily activities. While an exact cause is unknown, experts believe it can result from a combination of genetic factors, brain abnormalities, a hyperactive immune system, a viral or other infection and psychiatric or emotional causes. Symptoms include decreased levels of memory and concentration, restlessness or potentially insomnia, muscle and joint pain, tender cervical or axillary lymph nodes and recurrent sore throat.

There is no known cure and no prescription drug specifically for treating CFS.

According to CFIDS, research has shown that CFS occurs four times more frequently in women than men and most often in people ages 40 to 59, although anyone of any age may have it. Adolescents are more likely than children under the age of 12 to get it. It's also unlikely to be a genetic or contagious condition.

Not only are the diagnosed dealing with the condition's symptoms, but also its effects on their daily lives and trying to claim it as a disability to make up for the income they can't earn because they are unable to work, McCleary said. About 25 percent of those diagnosed with chronic fatigue are underemployed or unemployed. One of CFIDS' roles is to put policy into place through the Social Security Administration to make it easier to claim CFS as a disability, McCleary added.

"The process is still tough, whether it's CFS or Parkinson's disease or loss of a limb due to an accident," she said. "(The administration) hopes people are going to drop out and not try to get the benefits, but if you stick with it, approval rates are pretty good as long as you have reasonably complete medical documentation."

Still, one of CFS's most dangerous characteristics is taking away from quality of life.

"For the patients who successfully readjust their expectations, it's the same quality of life they would have had if they didn't get sick," McCleary said. "Part of what can be so difficult is trying to have the same life you thought you were going to have. ... It's not that they find new meaning in life; they just tune into things that would have been thought an interest."

Mooneyham said her symptoms of CFS include insomnia, remaining bedridden and lacking the energy to do the most basic of tasks. She yearns to be active again, to have a job and not have to constantly depend on the care of her husband, whom she credits for doing the things around the house that she can't.

"It's an incapacitating weakness," she said. "Maybe for healthy people it would be like having the flu but it never, never goes away. You don't feel better. I can't work. I can't do the things I really want."

Mooneyham, observing this reporter's note-taking, said, "I would even give anything to be that frantic ... to be able to write like that."

Attempts by the Tribune to reach local doctors were unsuccessful. Renown spokesperson Dan Davis contacted several doctors who said they didn't feel knowledgeable enough about chronic fatigue to speak on the condition.

Other local doctors are out of the office this week while they attend the ninth annual International Association of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (IACFS/ME) Research and Clinical Conference at the Peppermill in Reno this week.

Today is Patient Day at the conference for those who have been diagnosed with chronic fatigue, their caregivers and advocates for CFS and ME to learn about the latest research.

Meanwhile, the traveling photo exhibit at Meadowood will remain on display through Sunday.

Mooneyham said she hopes she gathers the strength to go see it and that CFS soon becomes recognized more prominently as a real illness.

"People just haven't wanted to believe it's real," she said. "The people who should be fought for are the ones having to fight."
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