SALT LAKE CITY — Matt Remes moved with his family to Utah to pursue his dreams of becoming an Olympic skier.
But before he even got here, his body was making other plans.
Doctors don't know what happened to the now 15-year-old Park City student, but it has been decided that Remes suffers with chronic fatigue syndrome, an illness that is not very well understood but is keeping him from doing things other teenage boys can do — even those who are characteristically resilient and exceptionally competitive, like Remes.
"I was just so tired, and I couldn't understand why," said Remes, whose knobby knees and skinny ankles resemble those of someone half his age.
Fortunately for him and the more than 1 million sufferers of the largely unrecognized illness in the United States, a husband and wife team of researchers at the University of Utah has found a way to objectively explain it.
Using relatively new gene expression technology, Alan and Kathleen Light have discovered that certain genes react to physical exertion in different ways for people with chronic fatigue syndrome or fibromyalgia. Both are illnesses in which the body can't perform to its previously healthy capacity. It tires much more quickly and sometimes exhibits horrible pain.
"Fatigue is one of the most important homeostatic mechanisms in the body," said Alan Light. "Fatigue is there to prevent you from using up your energy source" and ultimately preserve muscles, which help to control the body's functions.
"It's very important to not use up your energy source," he said, adding that people go to great lengths to avoid fatigue — using an elevator to go up one floor, driving around a parking lot to find the closest parking spot, and putting off long meetings or conferences.
"Fatigue is the omnipresent phenomenon that we all have, and it really does control your life," he said.
Alan Light has been studying fatigue for decades, but teamed up 10 years ago with his wife, who has been working on understanding fibromyalgia and pain. Their latest findings are part of a National Institutes of Health study involving about 140 patients with chronic fatigue syndrome in Utah.
The mechanism for obtaining a gene expression profile from patients is already patented by the university, as there is hope to turn it into an actual diagnostic tool all doctors can use to confirm what is going on in someone's body.
Kathleen Light said it is important that people who suffer from these now-documented conditions get the help they need.
"In many ways, they have had their lives stolen from them," she said. "They feel they can't function doing their occupation, or in their family roles. Their lives are just completely turned upside down from this."
Patients were asked to perform a moderate exercise challenge and have their blood drawn before and several times after the activity. When compared to the performance of healthy individuals, genetic differences were readily apparent.
Angela Linford, of Holladay, has both chronic fatigue syndrome and fibromyalgia symptoms that appeared years ago when she was training heavily for a marathon. She said she has days when she can only handle crawling to the bathroom when absolutely necessary, and she has given up almost all of the physical activities she once loved.
Linford participated in the Lights' study late last year and felt extremely validated by the results.
"I wanted to wear it on my forehead to say, 'This is what is going on with me. This is why I'm suffering,' so everyone can see it is real," she said. "It's a very shaming experience to go from being a contributing member of society, to not being able to go to the grocery store for yourself or fix yourself a piece of toast. It's so humiliating. To see that on paper makes a world of difference."
Linford, 35, said she believes the latest findings will "open doors for more research and help people get decent medical care." She cannot hold down a job and has had trouble getting approved for disability checks, as the condition has been hard to prove until now.
For a long time, the illness has been believed by many to be made up or exist only in the heads of those who suffer, said Dr. Lucinda Bateman, the only chronic fatigue and fibromyalgia specialist in the state.
She said patients with chronic fatigue actually make their illness worse if they do more than they are physically or mentally able to do.
With some drugs and nontraditional therapies, Bateman teaches patients how to manage their conditions and better understand how much they can really handle without having to spend days in bed recuperating.
Remes no longer attends school and can't handle homeschooling because of profound "brain fog," he said.
"I have trouble thinking, writing, reading, and math is particularly hard," he said. "I can't process the information. I get stuck on one thing for hours. And it is hard to even get interested in anything for any length of time."
For the most part, Remes spends his days on the couch and only occasionally feels good enough to go out to eat with his family.
"You get told by a lot of people that 'it's all in your head,'" he said. "It's nice to know that it's not."
The Lights' latest revelation, Bateman said, changes everything.
"The notion that this is, in any way, a lack of motivation or people not being very resilient or things like that, those are all out the window," she said.
The doctors and researchers agree that the body's neurologic response is likely triggered by infectious agents or a viral infection, or even a period of overdoing it physically.
Alan Light said if, with the blood tests, it can be genetically determined which people are more likely to have the response that leads to chronic fatigue or fibromyalgia, those people could then be treated differently when they get sick. They could be given anti-viral medications to prevent the potentially long-term and life-changing ailments.
"We no longer have to rely on just the opinion or the statement from the patient that 'I feel tired,'" he said. "Instead of having to rely on the subjective measure, we now have an objective measure."
In addition to prevention, Kathleen Light said their discovery could lead to better treatment and potentially a cure. It could also increase access to those things, as many patients have trouble documenting their disabilities.
And while Remes and Linford have nearly lost sight of the paths their lives were once headed down — a promising speed-skiing career for Remes and a husband and family for Linford — they have hope that things can change as quickly for them as they did before, leading to their current conditions.
"A lot of it is learning to live with it," Remes said, adding that he's learned the hard way what the trade-off is for a day of fun. It usually means at least a few days, if not months, in bed. For that reason, he hasn't skied in a long time.
"Too long," he said. Remes, however, is thinking about taking up a hobby in a less-involved sport — go-kart racing.
"I love competition. I've been competing since I was 5," he said. "It's hard to walk away from it, especially skiing. It's in my blood. I can't just walk away."
Bateman, a Johns Hopkins-trained physician, decided to take the road less traveled and acknowledge chronic fatigue and fibromyalgia after her sister came down with it and was given the run-around with doctors.
"I couldn't just push it off," Bateman said. "I knew her. I knew she didn't want to be sick."
On Saturday, during a meeting of the Organization for Fatigue and Fibromyalgia Education and Research, a nonprofit organization Bateman founded, she plans to announce the beginning of a fundraising campaign to build a dedicated clinic for patients who suffer with the illnesses. She said more than $1 million will be needed to hire and train physicians and develop the necessary care base, but that the timing is right.
And similarly, Alan Light said the most important part of their recent discovery is increasing public awareness, "first, that this is real, and secondly, that it can be treated more appropriately."
"Fatigue is not just something that is in your mind and you can pass it off by willing it to go away," he said. "It is fundamentally and structurally involved and it needs to be taken seriously."
Patients and families dealing with chronic fatigue syndrome (formally known as myalgic encephalomyelitis outside of the U.S.) or fibromyalgia are invited to attend a free open house from 1 p.m. to 4 p.m. Saturday at the Division of Services for the Blind and Visually Impaired, 250 N. 1950 West. For more information, visit www.offerutah.org.
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