"I think I have diagnosed myself with Chronic Fatigue Syndrome – I am always tired."
Unfortunately, the name of the condition can be misleading. Though "chronic fatigue" is a symptom that does define the condition, there is much more to the syndrome--officially called myalgic encephalomyelitis – than often being tired.
What Is ME/CFS?
This is an autoimmune disease characterized by profound and prolonged exhaustion. Rest does not relieve the symptoms, nor is it necessarily tied to another illness or condition.
CFS was formally defined in 1988 and its relative newness means much still needs to be learned about it. As research improves and more tests are done on patients with the disease, scientists will hopefully be better able to explain the cause of this debilitating condition and how to prevent it.
What do people with ME/CFS feel?
Defining the condition by "fatigue" often leads to misunderstanding. Rather than simply feeling tired, CFS victims suffer unceasing flu-like symptoms, a sense of physical exhaustion that may last for days or weeks and is not relieved by sleep.
In order to qualify for an official diagnosis, patients need to have four or more of the following symptoms present for at least six months: impaired memory or concentration; extreme, prolonged exhaustion and sickness following physical or mental activity; sleep that fails to refresh; muscle pain; multi-point pain without swelling or redness; headaches; frequent or recurring sore throat; tender cervical or axillary lymph nodes.
Who gets ME/CFS?
Unfortunately, ME/CFS, like many other chronic pain conditions—such as fibromyalgia, TMJ or endometriosis--is difficult to diagnose. There is no blood test or MRI scan that can be done to identify the condition. Instead, a doctor makes a diagnosis only after after much observation and testing for other conditions. It is, unfortunately, a diagnosis-by-deduction.
It’s estimated that 1 million Americans have the disease, and many more suffer from symptoms but have yet to receive an official diagnosis. The Centers for Disease Control and Prevention (CDC) estimates that only 20 percent of CFS patients have been diagnosed.
Studies have shown that nearly 80 percent of ME/CFS patients are women and that they often begin experiencing symptoms in their 40s and 50s.
How do you get ME/CFS?
This is a controversial issue. Past studies had suggested that the retrovirus XMRV had been identified as the cause of the condition. The study was then withdrawn due to lab contamination. FDA scientists have also performed genetic testing on blood samples and discovered similar virus gene sequences in 86 percent of ME/CFS patients, as opposed to under 7 percent of healthy patients.
Other studies have shown that childhood abuse can lead to ME/CFS.