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From 2004 until 2012, the Chronic Fatigue Syndrome Advisory Committee has recommended chronic fatigue syndrome have the same clinical diagnostic code in the United States as it has in the World Health Organization diagnostic code manual (ICD-10).

When no medical professional nor a professional organization took any action to make this happen, we formed a coalition of patient organizations that made an application to the National Center for Health Statistics in 2011.
In 2013, we joined others in opposing a new entry into ICD-10-CM for "Somatic Symptom Disorder."

Important Facts about U.S. Clinical Diagnostic Codes and CFS:
  • The World Health Organization mortality diagnostic code book (ICD-10) has CFS with the same code as myalgic encephalomyelitis in the neurology chapter.
  • Acccording to the U.S. Centers for Disease Control and Prevention, "As agreed, all modifications to the ICD-10 must conform to WHO conventions for the ICD."
  • Contrary to all other countries, the U.S. clinical diagnostic code book lists CFS under the fatigue section of the signs and symptoms chapter.
  • Many U.S. clinicians confuse CFS as being someone with just the symptom of chronic fatigue instead of the neurological disease with many other symptoms, due to the incorrect coding.
  • Research and government agencies are now using the terms "ME" and "CFS" interchangeably as research has shown CFS patients have the neurological abnormalities that is described in the ME criteria.
  • Almost all U.S. patients who meet one of the ME criteria are diagnosed with CFS.
As Part of the Coalition 4 ME/CFS, Our Actions toward Getting CFS Restored to the Proper Code:

As of spring 2013, the NCHS has not made this change.
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