To: United States Department of Health and Human Services, National Institutes of Health, and Centers for Disease Control
We, the undersigned, respectfully demand that Myalgic Encephalomyelitis (ME), an internationally recognized neurological disease, be also formally recognized as a distinct clinical entity in the United States by the National Institutes of Health and the Centers for Disease Control. It is time to make the case definition/diagnostic criteria explicit in the name.
Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a poorly defined, misunderstood, controversial syndrome which remains underfunded and underresearched. The name Chronic Fatigue Syndrome itself has trivialized the illness and further subjected these patients to incredulity and ridicule. The CFS rubric has not only neglected and failed to help those with ME, it has harmed them. ME patients will not improve with cognitive behavioral therapy (CBT) or graded exercise (in fact, exercise will make them worse) - yet these are considered treatments for CFS. Simply "renaming" CFS will not solve this problem.
ME should not be considered a subset of CFS, for the hallmarks of ME will not be present in the population of CFS patients once the Ramsay criteria are established in the US. Patients with Myalgic Encephalomyelitis under the CFS criteria must wait for six (6) months before acquiring a diagnosis, a critical period in which possible recovery is diminished by lack of proper treatment. The ME definition does not require a six month wait. (See Ramsay Definition at: http://www.egroups.co.uk/message/ME-itis_NOW/2.)
We, the undersigned, are "tired of being sick, not sick of being tired."
To read a complete discussion of the points outlined here, we suggest you