Tasha Kelemen, 42, directs a local non profit. She doesn’t look sick, but she’s had a hard time convincing peers — even doctors — that anything is wrong with her.
“A typical experience will be the resident comes in, looks at my folder, sees that I have chronic fatigue syndrome listed as my primary diagnosis, and then says to me, ‘Well, I think that must be what I have,'” she recalls, laughing. “You sort of learn that there’s no point, that you sort of have to control your anger.”
The condition known as chronic fatigue syndrome is mysterious and complex. It has stumped the medical system for centuries. There’s no test for it, which Kelemen and others say, along with its current name, makes the condition easy to dismiss.
“You might just as well call our illness ‘must sit down disorder,'” she says. “It’s just universally hated.”
For Kelemen, chronic fatigue syndrome has been far more debilitating than the name would suggest.
“Fatigue isn’t anywhere near what it is, you cannot move,” she says.
Kelemen says she developed the disease about 20 years ago, though it took several years for her to pin down a diagnosis. She’d always been active and athletic. She was never depressed. Then she got really sick working in Angola and she just wasn’t able to bounce back.
Kelemen can’t stand for very long. She needs a lot of accommodations at work. She experiences frequent dizziness, headaches, soar throats and unrefreshing sleep. Sometimes she can’t think straight. Light and noise bother her, especially at the end of the day. Even walking a few blocks beyond what she can handle may trigger symptoms and put her in bed for days.
Kelemen is just one story amid a complex landscape of a condition that can take many forms and shapes. But specialists say hers is a classic case of chronic fatigue syndrome (also known as myalgic encephalomyelitis in Europe), though not everyone has the same experiences or develops it after an acute illness.
Even so, she hesitates telling people that she has it.
“In the beginning, I’d tell people I have chronic fatigue syndrome, but I quickly learned the reaction you’d get was rolling eyes and a look of confusion.”
A new definition and name
“This disease is a poster-child for how language can get in the way,” says Dr. Ellen Clayton, a pediatrician at Vanderbilt University who chaired an independent advisory panel at the Institute of Medicine, who this winter issued a 235-page report redefining the illness.
Clayton’s group was tasked with reviewing all the research to date on chronic fatigue syndrome. They redefined the disease, stressing that it’s real.
“This a serious multi-system complex disease that has the ability to compromise the lives of individuals who are afflicted with it,” she says.
After much deliberation, the group also gave it a new name: Systemic Exertion Intolerance Disease [SEID].
The idea, Clayton and others said, was to better reflect a hallmark symptom and to emphasise that it’s more serious than a syndrome, that it’s a disease.
The committee wrote that “more research is urgently needed,” but it developed a simplified criteria to help the medical community do a better job of identifying and addressing the disease, with one of its hallmark symptoms being “a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, education, social or personal activities that persist for more than six months.”
That may be partnered with cognitive problems, terrible sleep and difficulty standing.
“That’s the purpose, to make it easier for the doctor to diagnose and take it seriously,” says Dr. Benjamin Natelson, a professor of neurology at Ichan School of Medicine at Mount Sinai who also served on the panel and who served on the 1994 committee that shaped its most recent definition.
He says that’s important because so often, when doctors can’t diagnose something with a test, they don’t know what it could be and tell patients “it’s all in their heads.”
Dr. Natelson thinks fewer people will likely fall into the newly defined SEID than those who have chronic fatigue syndrome. The report estimates SEID affects anywhere from 860,000 to 2.5 million Americans.
An old condition
The name, systemic exertion intolerance disease, may be new but the disease itself isn’t, according to Stephen Gluckman, a primary care and infectious disease doctor at Penn Center for Primary Care who cares for several dozen patients with the disease.
“If you came into this office in 1750, I would have told you you had febricula because of its association with low grade fevers,” he says. “If you came into this office in 1880 I would have said you had typical neuromyastenia because of a theory about how the disease impacted the nervous system.”
At other times the disease was wrongly attributed to and named after a bacteria or virus.
Gluckman, who wasn’t on the committee, thinks its new report will help patients marred by stigma associated with the previous name. More than that, he sees it as part of a wave of new research that’s further validating the disease.
A recent study out of Columbia University, for example, has identified certain immune responses in newly diagnosed patients, further challenging the notion that it’s a psychological problem.
Despite all this, Gluckman says it will take time for medicine to accept the condition. He says it’s hard to convince doctors to take on patients.
“It’s almost like a joke,” he says. “In a sense [they say] ‘Oh my God, I don’t want to see these chronic disease patients. I’m not kidding.”
More research needed
For Tasha Kelemen, the recent developments come as a huge relief.
“It’s just finally legitimating to have the world know the is a real thing,” she says.
Like many others, she doesn’t think this new name – Systemic Exertion Intolerance Disease – is by any means perfect. But she is psyched to never have to say or hear chronic fatigue syndrome ever again.
For her, the real opportunity and hope is not in the name, but rather in the renewed focus on the disease and the recognition that more research is needed to understand its causes and characteristics.
Even the panel says that as we learn more, it’s likely that this new name, won’t be the last.