Sunday, February 04, 2007

CFS gets a new name

From an ImmuneSupport.com newsletter:  “A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether ‘Chronic Fatigue Syndrome’ was an appropriate name for the disease, and to suggest an alternative name if necessary.  Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names.

The majority of attention was spent discussing ‘ME’ - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. ‘ME’ has been used in many countries, including Great Britain.  ‘ME’ has historically been used to describe ‘Myalgic Encephalomyelitis’ (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred ‘Myalgic Encephalopathy’ (nervous system pathology with associated muscle pain), which is also abbreviated ‘ME’. This satisfied the researchers that this form of the term ‘ME’ is diagnostically accurate.

The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that ‘CFS’ should accompany any new name, at least for a period of time. The researchers expressed their belief that the term ‘ME/CFS’ is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where ‘CFS’ was recently changed to ‘ME/CFS’.”

I think this is definitely a step in the right direction, even if something simple like a name change seems a bit silly and trivial.  Most healthy people think they understand the “fatigue” element of “chronic fatigue syndrome”, which makes the condition so maligned and misunderstood.  A name like ‘Myalgic Encephalopathy’ commands a lot more respect.

Posted by Leigh-Ann on 02/04 at 03:10 AM
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