To the Editor of Consumer Reports:
You ran a very useful article in the February 2007 issue, "Get better care from your doctor." Much good advice. However, the writer referred to Chronic Fatigue Syndrome as "chronic fatigue." This indicates that Consumer Reports does not understand the illness variously known as Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalopathy (ME), or, as it is coming to be known more often now, ME-CFS.
This complex, multi-organ, life-destroying illness is not ‘chronic fatigue.’
This is an illness that has been plagued for decades both by the lack of a diagnostic marker to definitively indicate one has CFS/ME, and by the name itself: Chronic Fatigue Syndrome. Both have contributed to its being disparaged by the medical community and receiving very minimal funding – given the great number of people who suffer with it – by comparison with other better known, better understood, but not more serious illnesses.
Common responses are that:
- Almost everyone thinks they are fatigued at some time. Believe me, they are not decimated as they are with CFS/ME.
- Or "oh, you look well." Patients generally do not show outward symptoms.
- And disbelief. Probably the majority of physicians still believe this is not a true physical illness but a psychological one. Untrue, as thousands of studies, including brain scans, have shown definitely.
Progress is being made in research to identify a marker or markers. Progress is being made in the medical community, slowly, as more doctors begin to understand the illness correctly. Progress will be made when the name is no longer Chronic Fatigue Syndrome.
Eight of the country's preeminent CFS/ME doctors met recently at the International Association for Chronic Fatigue Syndrome conference, and collectively chose to change the name in general use to CFS/ME: Chronic Fatigue Syndrome/Myalgic Encephalopathy (not encephalomelitis). Here is a link to that information: http://www.immunesupport.com/em/EM021407C/nameChange.cfm.
The National CFIDS Association and the Centers for Disease Control are also collaborating to raise awareness of the seriousness of this illness. For more information, please go to http://www.cdc.gov/cfs and http://www.cfids.org.
Those with ME/CFS would appreciate a correction in one of your future issues stating that you really meant 'Chronic Fatigue Syndrome,' also called 'Chronic Fatigue Syndrome/Myalgic Encephalopathy' (CFS/ME or ME/CFS), or 'Chronic Fatigue and Immune Dysfunction Syndrome' (CFIDS).
Thank you very much.
Billie Moore [ME-CFS patient]