WHAT IS ME?
According to the International Consensus Criteria (2011), "Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus."
IS ME A MYSTERY DISEASE?
​​​​​ME-ICC is not a mystery.

We may not know what causes ME, the same as we don't know what causes multiple sclerosis (MS).  In 2011, 26 experts took the mystery out of ME by creating the International Consensus Criteria (ICC) that helps doctors understand the breadth and depth of ME.

They went on to write the ICPrimer that describes the ME experience and removes the mystery behind the symptoms we experience.  We should drop the mystery word and educate everyone by using the ICC.

By doing that, a recognition of ME will take place, similar to what those who have MS experience.
WHAT'S BEHIND ALL OF THE DIFFERENT LABELS FOR ME?
That depends on where you live and when it is said.  Labels for ME are attached to various meanings and that has varied over time and location.  The “correct” label is the one most closely aligned to a person's experience, dictating what kind of medical treatment is needed.  A strong connection needs to be made between the label used and the treatments that should be expected.  To get there, it helps to connect the label to the criteria that will provide the proper testing and treatments for each patient.

So we think it is time we started using clarification labels.

ME-Ramsay (Dr. Melvin Ramsay; original description of ME - 1950s)
CFS-Fukuda (Dr. Keiji Fukuda; the 1994 CDC criteria)
ME/CFS-CCC (The Canadian Consensus Criteria (G93.3) - 2003)
ME-ICC (International Consensus Criteria - 2011)
ME/CFS-SEID (The IOM report, now the National Academy of Medicine (NOM) - 2015)
ME/CFS (discussing both ME & CFS as separate things)
ME-Hyde (enterovirus connected to polio)
CFS-Reeves
CFS-Holmes
CFS-NICE (UK - using various labels of CFS & ME & ME/CFS) 
CFS-Oxford (UK - using various labels of CFS & ME & ME/CFS)

So we really need a huge education campaign to help everyone be more clear about what they mean when they say ME or CFS or ME/CFS.  See the Understanding Criteria page for more information.
OUT OF ALL THE DISEASES BEING STUDIED, WHY FOCUS ON ME?
  • ME has been falsely characterized as psychogenic by the CDC for almost 40 years
  • There have been DECADES of neglect and misinformation
  • ME has been stigmatized as "chronic fatigue syndrome" and "yuppie flu"
  • Improper and harmful treatments are still prevalent
  • Incorrect and harmful information still persists on reputable websites
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Question 7
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