The name change campaign is alive and well with a move toward the use of ME/CFS, making patient unity and support crucial in moving forward with its implementation.
We are making great progress in changing the name (Chronic Fatigue Syndrome) that has caused us such anguish and humiliation for the past 19 years. After years of suffering its injustices, we are just months away from implementing a new name that will help us gain the recognition and support that we deserve.
To recap, a serious effort to change the name was launched in August 2006 with the introduction of Campaign for a Fair Name. The Name Change Advisory Board, composed of eight of the most highly regarded ME/CFS experts in the world, was formed and met in January 2007 to come up with a recommendation for a new name. The Advisory Board determined ME/CFS (Myalgic Encephalopathy-Chronic Fatigue Syndrome) was the best overall choice for several key reasons:
1. ME/CFS is medically and diagnostically correct.
2. ME/CFS is a scientific sounding name which gives the illness more credibility.
3. ME/CFS is intended to be used as an umbrella term to satisfy as many groups as possible.
4. ME/CFS still includes “CFS” which avoids problems with losing insurance or disability claims.
5. ME/CFS provides freedom and flexibility – some folks like Myalgic Encephalopathy, others prefer Myalgic Encephalomyelitis.
The recommendation has been made, and in the next few months we are moving to the next exciting phase: your vote! There are bound to be conflicting opinions and emotions about the new name, but there is one thing that we can all agree on: The name needs to change! In order for that to happen, we need to get behind the chosen name and make a strong, unified impact. If we don’t do this, if we get preoccupied with picking a “winner,” we are in grave danger of losing the battle altogether and the entire effort could collapse.
Here are some crucial points to consider. ME/CFS gives you the freedom of using “Myalgic Encephalopathy” or “Myalgic Encephalomyelitis.” You get to choose whichever term you prefer because as an umbrella term, ME/CFS stands for both. In fact, in an exciting new development, the UK has issued a clinical guideline for the National Health Service referring to “Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy)” – implying the two are interchangeable, and that both legitimately describe the same illness…ME. Again, the choice is yours.
Over the next several months, we will be introducing you to our “Dream Team,” the members of the ‘New Name Implementation Committee’ – the NNIC. I am honored to introduce our first four members, Drs. Leonard Jason, PhD, David Bell, MD, and Charles Lapp, MD; and Karen Lee Richards, a leading ME/CFS & FM patient advocate and co-founder of the NFA.
These and other NNIC members – world-renowned ME/CFS experts, prominent patient leaders and activists, CFS-ME publishers, authors, and celebrities – will work together to implement a name that will finally bring dignity to patients starving for respect and recognition.
With hope and conviction,
CFS patient and volunteer
PS. Looking for the best description ever of the name change effort? Then read this week’s feature article by Dorothy Wall, author of the much-admired book, Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome.