This is a severely disabling disease. Some patients with ME are diagnosed with Chronic Fatigue Syndrome, still others do not meet the official definition of CFS. Many patients and researchers believe the current definitions are problematic.
For moderate to severe patients, it's like living with late-stage cancer, full-blown AIDS, or congestive heart failure, for decades. It is more disabling than multiple sclerosis and more prevalent.
1 million Americans have this disease. 250,000 Brits. Over 100,000 Canadians and Australians. 85% are women. 80% are undiagnosed.
The US National Institutes of Health will allocate $5 million for Chronic Fatigue Syndrome research this year. It contributes more to the study of allergies and male pattern baldness.
ME occurs in outbreak, cluster, and sporadic form. In the 1980s, the rate of new cases of ME was higher than the rate of new cases of polio at the height of the polio epidemic.
Although the cause is not known, the effects can be devastating. Patients can have severely dysfunctional immune systems, brain damage, mitochondrial dysfunction, and a perverse response to ordinary exertion.
The symptoms associated with this damage can leave many homebound or bedbound for decades.
Even though these abnormalities have been demonstrated in a research setting, they are usually invisible on standard tests. As a result, many doctors will diagnose their most severely ill patients with hysteria. Or tell them to try a new haircut.
As few as 4% of severely ill patients recover.
To learn more about the symptoms of Myalgic Encephalomyelitis, please see the International Consensus Criteria.