Called a ‘controversial illness’ most people feel it’s a malady of the mind. But chronic fatigue syndrome is a ‘real and serious disease’ that calls for genuine diagnosis, doctors have said. These comments were made by the Institute of Medicine, a prestigious government advisory group in the U.S.
The federal government urged the independent organisation to examine the state of chronic fatigue diagnosis after it was flooded with stories by patients who were misdiagnosed or even dismissed by sceptical doctors. IOM recently redefined chronic fatigue syndrome, setting five key symptoms as simple criteria for doctors to use in making a diagnosis. Experts also demanded a new name for the condition, as many patients feel the term ‘chronic fatigue’ belittles their suffering. Alternatively, they assert it should be called Systemic Exertion Intolerance Disease, or SEID, to reflect that symptoms worsen after exertion.
Chronic fatigue syndrome is also called ME. The condition troubles between one and four million in the US and millions more worldwide – and the combination of symptoms can devastate a patient’s life for decades. Its main sign is non-stop and intense fatigue where, on a bad day, a simple activity like grocery shopping can put someone to bed. Memory problems or other symptoms usually accompany it. Some typical symptoms are: joint and muscle pain, incapacitating headaches, food intolerance, a sore throat or enlarged lymph nodes and sensitivity to light.
But there’s no set treatment and the IOM found 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. ‘It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too”.’ She added: ‘People shouldn’t wander around in the wilderness for years trying to get a diagnosis.’
WHAT IS Chronic Fatigue/ME?
Chronic fatigue syndrome is also called ME. The condition troubles between one and four million in the US and millions more worldwide – and the combination of symptoms can devastate a patient’s life for decades. As per Jose Montoya, a professor of medicine at Stanford University and a leading expert in CFS the condition is ‘one of the greatest scientific and medical challenges of our time’. He said: ‘Its symptoms often include not only overwhelming fatigue but also:
Joint and muscle pain
Sore throat/enlarged lymph nodes
Abnormal blood-pressure and heart-rate events
Hypersensitivity to light, noise or other sensations
According to the proposals from the IOM, diagnosing chronic fatigue would entail 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 further have no less than one other symptom of the following:
* Cognitive impairment, sometimes described as ‘brain fog’
* What’s called orthostatic intolerance – meaning symptoms improve when lying down and patients find it hard to stay upright for long.
Dr Lucinda Bateman, of the Fatigue Consultation Clinic in Salt Lake City, said: ‘We are hoping that these diagnostic criteria provide a very clear path,’ she said. ‘It’s a fresh start.’ There are ways to treat some of the symptoms, if doctors make a diagnosis, she added. In a bid to spread the word, committee members are writing about the diagnostic criteria in various medical journals, & the institute’s web site, www.iom.edu, will ultimately post a guide for doctors.
The recommendations mark ‘a critical step toward assisting medical providers in making a diagnosis for those with this serious and debilitating illness,’ said Dr Nancy Lee, of the HHS Office on Women’s Health.
She further said that government would review the proposals. A year back Stanford University researchers revealed the brains of people diagnosed with chronic fatigue syndrome are markedly different to those of healthy people. An MRI scan established the fact that overall white matter content of CFS patients’ brains was reduced compared to that of healthy participants’ brains.
The term ‘white matter’ represents the long, cable-like nerve tracts conveying signals and information through dispersed concentrations of ‘grey matter’ – which specialise in processing information. According to researchers while the first finding wasn’t entirely unexpected, the second was. With use of advanced imaging techniques, they identified a consistent abnormality in a specific part of a nerve tract in the right hemisphere of CFS patients’ brains. The tract, that joins the frontal lobe with the temporal lobe, assumed an abnormal appearance in CFS patients. In addition, the study identified a strong connection between the degree of abnormality in the patient’s tract and the severity of their CFS. Finding number three highlighted a thickening of the grey matter in the frontal lobe and temporal lobe in CFS patients, compared with the control group
WHAT’S IN A NAME ?
Patients since decades had sought a change to a name they say belittles their suffering. Some groups had even started use of another term – myalgic encephalomyelitis, or ME. The latest report rejected that option, saying not all patients have the muscle pain and brain or spinal cord inflammation that medical jargon implies. ‘This is a defining moment for the disease,’ said Carol Head of the Solve ME/CFS Initiative, the largest advocacy organisation for the condition in the US. Beyond improving diagnosis, the government-funded report should spur more research to understand and treat the disease, she said. It’s too soon to know if the new name will catch on, but including the word ‘disease’ instead of ‘syndrome’ is an improvement, Head added. ‘Having called this serious disease by an inappropriate and frankly insulting name is one of the factors that kept doctors, friends, family members, even employers from affording it the seriousness it deserves,’ she said