Chronic fatigue syndrome is “a real and serious disease,” experts say
After being dubbed the “Yuppie Disease” (among other less attractive monikers) and dismissed as “all in the mind” for years, chronic fatigue syndrome (CFS) has finally been recognised as a “real and serious disease” that needs a proper diagnosis.
So says the Institute of Medicine (IOM), a government advisory group in the US that was asked by the federal government to investigate the state of chronic fatigue diagnosis after it was swamped with tales of patients being misdiagnosed or even dismissed by sceptical doctors.
Last week, the IOM panel sought to redefine chronic fatigue syndrome, setting five main symptoms as simple criteria for making a diagnosis.
They also called for a new name for the condition, arguing it should be called Systemic Exertion Intolerance Disease (SEID) to reflect that symptoms worsen after exertion.
Patients have long sought a change to a name they say belittles their suffering, with some already adopting the term Myalgic Encephalomyelitis (ME).
That option was nevertheless rejected in the new report on the grounds that not all patients experience the muscle pain and brain or spinal cord inflammation that medical jargon reflects.
Last year Stanford University researchers nevertheless revealed that the brains of those diagnosed with chronic fatigue syndrome are distinctly different to those of healthy people.
Described by Jose Montoya, a professor of medicine at Stanford University, as “one of the greatest scientific and medical challenges of our time,” the condition affects between one and four million in the US and millions more worldwide. The combination of symptoms can devastate a patient’s life for decades.
It is characterised by persistent and profound fatigue in which, on a bad day, a simple activity like grocery shopping can put someone to bed. It is often accompanied by memory problems.
Other symptoms may include joint and muscle pain, incapacitating headaches, food intolerance, a sore throat or enlarged lymph nodes and sensitivity to light.
There is no specific treatment and the IOM found that less than a third of medical schools teach about the disease.
“Chronic fatigue is not a figment of patients’ imagination,” said Dr Ellen Wright Clayton of Vanderbilt University’s Center for Biomedical Ethics and Society, who chaired the IOM panel. “These patients have real symptoms. They deserve real care.
“People shouldn’t wander around in the wilderness for years trying to get a diagnosis,” she added.
Under the new IOM proposals, diagnosing chronic fatigue would require the following three core symptoms:
* Fatigue and a reduction in activity that lasts for more than six months
* Fatigue that gets worse after exertion
* Sleep that is unrefreshing despite exhaustion
Patients must also have at least one other symptom of the following:
* Cognitive impairment, sometimes described as “brain fog”
* Orthostatic intolerance – meaning patients find it hard to stay upright for long and symptoms improve when lying down.
To spread the word, committee members are writing about the diagnostic criteria in several medical journals, and the institute’s web site, www.iom.edu, will post a guide for doctors.