What Is Myalgic Encephalomyelitis?
Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome (CFS) is the worst disease you’ve never heard of. It is a complex and debilitating chronic disease with a serious impact on one’s health and quality of life. Approximately 25% of people who are diagnosed with ME/CFS are disabled by the disease. The estimated annual cost in the United States alone due to loss of productivity is between $9 billion and $37 billion (CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education Elizabeth R. Unger, PhD, MD1; Jin-Mann Sally Lin, PhD1; Dana J. Brimmer PhD1; Charles W. Lapp, MD2; Anthony L. Komaroff, MD3; Avindra Nath, MD4; Susan Laird, MSN5; John Iskander, MD6). Although research has shown that ME/CFS is roughly four times more likely to occur in women than men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.
ME/CFS is only beginning to be recognized by medical communities in the United States and Western Europe. In the United States, the Federal government spends roughly $2.00 per patient on research. In other countries, however, individuals with ME/CFS are left to suffer in silence with no support. Still, even in the United States fewer than 20% of ME/CFS patients have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is not one diagnostic test or biomarker that is conclusive. Given the poor understanding of etiology, the lack of pharmaceutical investment, the lack of FDA-approved drugs, and that no cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Sometimes patients hide their symptoms to others, which makes it difficult for family members, friends, and the public to understand the challenges of the condition. Many patients are simply not believed to be sick, despite debilitating symptoms that include extreme exhaustion, non-restorative sleep, brain fog/cognitive impairment, joint pain, inflamed lymph nodes, persistent sore throat, severe headache, and neurological abnormalities, among other symptoms, including complete organ shut down. Approximately 1 – 2.4 million people in the United States and 17 million people worldwide have ME/CFS.