The Name Change Advisory Board is still working hard to approve a fitting name that matches the devestation of Chronic Fatigue Syndrome. The Name Change Advisory Board (NCAB) approved a resolution this week to amend their earlier recommendation for the new name from myalgic encephalopathy/CFS to the acronym ME/CFS. There has been disagreement within the patient community about which “E” in ME is better – encephalomyelitis or encephalopathy. There are good arguments on both sides, but no argument is strong enough that it should cause the name change effort to fail. Recognizing this was an issue, the Board eliminated the argument altogether by proposing the use of the acronym.
CFS will still be part of the acronym for the time being due to research purposes, insurance codes, and for disability and other medical reasons. Eventually they are looking to drop the CFS entirely.
Those reading this who do not have CFS probably wonder why are these people making such a fuss over a name? Here’s why (thanks, Rich Carson for these great words):
Virtually everyone knows that chronic fatigue syndrome is a horrible name that harms patients by making light of their suffering. It is a name that has inflicted unimaginable harm and it has lasted too long.
How could people with such a weak sounding disease be as dreadfully sick as cancer patients on chemotherapy? How could they be suffering as much as someone with multiple sclerosis, COPD, or in the end stages of AIDS or kidney disease? Yet according to research occurring around the world, that is exactly how bad CFS really is.
Everybody experiences fatigue from time to time. However, the fatigue of CFS is extreme and pervasive – more importantly, it is only one of many symptoms of the illness. The term chronic FATIGUE syndrome trivializes the seriousness of our disease and damages patients every minute of every day. Imagine calling Parkinson’s disease “chronic shakiness disease”! Or calling Alzheimer’s disease “chronic forgetfulness disease”! It would be reprehensible – a shameful travesty.
The Campaign For A Fair Name is giving those of us who suffer a chance to finally be heard and to make it known OFFICIALLY that we are more than just “tired” and that we expect to be taken seriously.
Look for an official Campaign For A Fair Name website in January 2008. This site will be the center of all action surrounding the name change.
The Campaign For A Fair Name still needs a lot of support and help throughout this transition, so if you have some time that you would like to volunteer to help, please email CFSnameChange@prohealth.com.