Chronic Lyme Disease Summit 2

Re-naming Chronic Fatigue Syndrome

This was sent to me at at online support group:

New Name for Chronic Fatigue Syndrome~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~An announcement from ProHealth Founder Rich Carson:The CFS Name Change Advisory Board - whose combinedresearch and clinical experience totals more than 150 years -met in Florida January 12, and reached a consensus agreementthat a new name should be adopted for Chronic FatigueSyndrome. While it is certain that no name will please allpatients, the group feels that the new name they propose willimprove the legitimacy of the disease, and remove the stigma ofhaving a disease with 'fatigue' as the primary descriptor. Theirreport follows.A group of noted CFS researchers and clinicians met January12 in Florida to discuss whether 'Chronic Fatigue Syndrome'was an appropriate name for the disease, and to suggest analternative name if necessary. Patients and CFS clinicians havelong held that 'chronic fatigue syndrome' trivializes the seriousnature of the disorder, and have called for a change of the namefirst adopted by the CDC in 1988.The impetus for assembling the group was the belief that a panelof the world's leading experts could provide legitimacy andscientific credibility to patients seeking a new name.The committee, called "the CFS Name Change Advisory Board"by its organizer, CFS patient Rich Carson, included Drs.Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp,Nancy Klimas, Anthony Komaroff, Leonard Jason, and DanielPeterson. Dr. Peterson was unable to attend the meeting, butwas consulted via telephone afterward.Committee members agreed that CFS downplays the severity ofthe disease and is hurtful to patients, and discussion focused onalternative names. The majority of attention was spentdiscussing 'ME' - the name first used to describe the illness in aneditorial published in The Lancet in 1956 by Sir DonaldAcheson, MD. 'ME' has been used in many countries, includingGreat Britain.'ME' has historically been used to describe 'MyalgicEncephalomyelitis' (nervous system inflammation involvingmuscle pain) - a term that does not accurately describe thedisease process in all patients. Committee members preferred'Myalgic Encephalopathy' (nervous system pathology withassociated muscle pain), which is also abbreviated 'ME'. Thissatisfied the researchers that this form of the term 'ME' isdiagnostically accurate.Recent scientific advances point to the usefulness of the MElabel, as brain pathology with often painful consequences,especially in muscle, is increasingly documented in patients withthis condition.The group recognized that dropping CFS completely from a newname could cause problems with disability and medicalinsurance claims, and recommended that 'CFS' shouldaccompany any new name, at least for a period of time. It wasacknowledged that CFS currently has some name recognition,though according to the CDC, less than 20 percent of thepatients have been diagnosed.The researchers expressed their belief that the term 'ME/CFS'(or 'CFS/ME') is diagnostically accurate and, unlike CFS, is notpejorative to patients. It was also noted that this move isconsistent with events occurring in different countries, such asCanada, where 'CFS' was recently changed to 'ME/CFS'.In a recent related event, the board of directors of theInternational Association for CFS (IACFS) voted to recommendthat the name of that organization be changed to the IACFS/ME.This motion is currently being voted on by its members, and ifapproved, the name of that organization will soon be changed.