This is what I live with everyday ...Sometimes the worst part is how OTHERS react to it.

Coping With the Reality of Chronic Fatigue Syndrome

By DAVID TULLER

Researchers, doctors and patient advocates all agree that managing and coping with chronic fatigue syndrome is a major challenge for patients as well as their families. Here are some important factors they say are necessary to keep in mind.

1. C.F.S. is a real disease. Many people, including some doctors, believe that people suffering from chronic fatigue do not have anything physiologically wrong with them. The resulting stigma and discrimination often cause patients to blame themselves and can make it extremely difficult for them to obtain the care, support and empathy they need.

2. There are no diagnostic laboratory tests for C.F.S. A diagnosis is made on the basis of six months of fatigue and other symptoms that cannot be explained any other way. Some laboratory tests may be necessary to rule out other possible causes of chronic fatigue, like Lyme disease, multiple sclerosis, depression or hypothyroidism. C.F.S. is often misdiagnosed as other conditions that have similar symptoms.

3. C.F.S. is called “myalgic encephalomyelitis,” “myalgic encephalopathy,” or “M.E.” in other countries. Many patients and experts in the United States favor these more medical-sounding terms, especially because research has shown that they increase the seriousness with which clinicians and others view the condition. But the Centers for Disease Control and Prevention is not currently in favor of changing the name.

4. Treatment may relieve fatigue, but there is no cure for C.F.S. Managing the disease and its symptoms through lifestyle and diet changes is critical in learning to live with it. To avoid relapses, patients need to closely monitor their energy levels, adjust their work and social activities and be sure not to overextend themselves, even when they are feeling well. Yoga, meditation and other movement and relaxation strategies, along with a modified exercise regimen, can also help patients to cope and rebuild their strength.

5. C.F.S. is not known to be contagious. It does sometimes cluster in families, but this is believed to be because of a common genetic susceptibility or familial predisposition rather than transmission from one person to another. Experts say patients should not be fearful that those close to them will also fall ill.