This disorder is often devastating for those who suffer from it. The diagnostic criteria offered in this report are intended to promote prompt diagnosis for patients and enhance treatment, as well as improve public understanding of the disease. – Victor Dzau, Institute of Medicine president
SALT LAKE CITY — National health experts, including one Utah doctor, released the results of a year of study on Tuesday legitimizing the symptoms of chronic fatigue and giving the disorder a new name.
Health officials hope the new name — systemic exertion intolerance disease — will promote better understanding for patients, physicians and the public.
"Chronic fatigue syndrome is a widespread disease, yet it remains largely misunderstood throughout the medical community," said Dr. Lucinda Bateman, director of the Fatigue Consultation Clinic of Salt Lake City and a member of a national Institute of Medicine committee that studied the illness. She was in Washington, D.C., on Tuesday for the announcement.
"This lack of information often leaves patients undiagnosed and untreated, chronically suffering, unable to work or play, and financially burdened," Bateman said.
Heather Jackson, of Cottonwood Heights, spent decades visiting various specialists and being prescribed different medications because no doctor understood what she was feeling. She was diagnosed with fibromyalgia at age 14, and things got worse.
"Doctors described it as the opposite of (multiple sclerosis), where instead of the muscles getting weaker, they get tighter, which wasn't what it was at all," Jackson recalled. "Once I got older, I would tell them it was the worst flu you ever had, only it never goes away."
Amid the chronic migraines and severe fatigue, Jackson experienced intense joint and nerve pain that traveled the length of her spine. Doctors called her a "hypochondriac" and said she was attempting to avoid something at school, but Jackson said it wasn't true.
"It was hard to describe," she said. "I hurt and I hurt all over and it was all of the time."
Jackson, now a 34-year-old mother of three girls, didn't finish high school with her peers, having missed out on most of her senior year. When taking 19 pills was the ticket for a good day, she decided enough was enough and quit seeing doctors for a while.
"Even though there is no cure for it, it is wonderfully helpful to have people understand you," she said.
Chronic fatigue impacts between 836,000 and 2.5 million Americans, but many go undiagnosed or are misdiagnosed for long periods of time, as doctors don't often know how to treat or commonly blame symptoms on other issues, according to Ellen Wright Clayton, a professor of pediatrics and law who led the nationwide committee of experts on the study of chronic fatigue.
"There is so much research that needs to be done," she said, adding that new distinction for the disease should open those doors, as well as educate the public about the disorder that has often been thought to be made up.
"It's clear that chronic fatigue does a tremendous disservice to these patients," Clayton said, declaring that the new name for the disease, systemic exertion intolerance disease, is "named for what it really is."
Jackson said the official recognition of symptoms as an actual disease "is amazing."
"This is a real thing. I am really feeling this every day," she said, adding that when people around her understand what she's going through, it is easier to live.
Jackson, whose husband works as a pilot, takes care of their children as best she can, getting them off to school in the morning and welcoming them home in the afternoon. It's what happens, or doesn't happen in between that makes all the difference.
"Other moms might be cleaning, shopping or working out, but I have to reserve that time to be down, to just rest," she said. "If I don't get that down time, it makes even just focusing on homework very difficult for me."
Much of the family's time together is spent on or around their mother's bed.
And while parenting with the sickness is difficult, Jackson said her children serve as a "reason to keep going and to get up in the morning."
Previously called myalgic encephalomyelitis/chronic fatigue syndrome, the committee hopes that by providing a new name and clear diagnostic criteria it will help more patients find relief.
"This disorder is often devastating for those who suffer from it," said Victor Dzau, Institute of Medicine president. "The diagnostic criteria offered in this report are intended to promote prompt diagnosis for patients and enhance treatment, as well as improve public understanding of the disease."
Jackson is one of the lucky patients being treated by Bateman, who is the only chronic fatigue specialist in the local market. Bateman has a waiting list of patients seeking an understanding physician.
A nonprofit the doctor helped found, called the Organization for Fatigue and Fibromyalgia Education and Research, plans to open a facility to house at least one more doctor to address the increasing number of patients Tuesday's announcement will likely spur.
The committee recommends that physicians diagnose the disease following an appropriate history, physical examination and medical work-up, just as they would with any serious illness. Symptoms should include an inability to participate in activity levels that were common prior to feeling ill and profound fatigue following such exertion, worsening of symptoms after any type of exertion (physical, cognitive or emotional), and unrefreshing sleep. It is also recommended that either cognitive impairment or the inability to remain upright with symptoms that improve when lying down are experienced.
The symptoms should also be present for at least six months, according to the committee that was commissioned and sponsored by the U.S. Department of Health and Human Services, the National Institutes of Health, Centers for Disease Control and Prevention, Food and Drug Administration and other federal agencies.
"It'll be nice to get rid of the stigma that these symptoms aren't real," Jackson said. "For so many years, I was just wishing that there would be a doctor or doctors that would step up to the plate and make the effort that was needed to understand this disorder, this disease. I didn't grow up with that, and it was hard."
More information, including scientific evidence on the symptoms and available treatments for systemic exertion intolerance disease, and the entire 255-page report from the Institute of Medicine committee can be found online, at www.iom.edu/mecfs.
A cause for the illness remains unknown, although in some cases symptoms have been triggered by an infection, according to the Institute of Medicine. The disease's symptoms, however, can be treated, even though a cure does not exist.
"All of us have this disease and we're trying to find others to lift them up and say they're not alone, that they're not crazy," Jackson, who volunteers with OFFER to increase awareness of the disease, said. "You're OK. You have a future. You can do the things you want to do. You just have to adjust your life so you can do them."
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