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 providing an effective vehicle for patients to take control of their destiny by removing the name chronic fatigue syndrome once and for all. The Campaign is gaining ground on several fronts and momentum is building. Here’s what’s happening:
New Advisory Board Resolution
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. (See "ME/CFS Gets the Nod.") 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.
As in the NCAB’s original recommendation, ‘CFS’ is included in the proposed acronym for both transitional and logistical reasons - primarily to prevent harming patients involved in disability and medical insurance issues, and to provide continuity in the research area. Over time, the CFS portion of the acronym will be eliminated.
It should be noted that this does not set a precedent, as the largest organization of CFS healthcare professionals in the world changed its name earlier this year to IACFS/ME - without differentiation or discrimination as to which form of ME is better.
The Road Ahead – Making It Happen
The Campaign is still in the education and advocacy phase, and lots of things are happening behind the scenes. Perhaps the most important effort at this time is the formation of the FNIC - the Fair Name Implementation Committee. The FNIC is a highly dedicated and respected group of patient leaders and advocates, doctors, celebrities, and other VIP’s, founded with one goal in mind: to change the name. The Committee’s membership presently stands at 22, and I think you will be impressed to see the names on the roster. These are the people who can make this thing happen.
Although the Committee may eventually choose to work on another important goal - refining the Fukuda case definition of CFS now used in the U.S. to make it consistent with the better, more stringent ME definition used in other countries such as Canada (where the disease is also now called ME/CFS) - the Committee’s first and most important job is to change the name.
Name Change Website – Campaign Central
Campaign for a Fair Name will launch its own website in January 2008 - and the site will be the name change effort’s center of action; all news and information will be posted and updated there regularly for all to see. The site will promote the use of ME/CFS, but patients will have the final word in a vote to accept or reject ME/CFS that will be held in May 2008. Patients did not have a chance to have their voices heard when the disease was named in 1988, so it is imperative that their voices be heard now. I believe this is the most critical part of the Campaign.
Enlisting Patient Volunteers and Support
There is much work ahead: contacting over 450 volunteers who asked to participate in the Campaign; establishing voting procedures; finding an independent company to handle the vote (such as Harris Polls); establishing a petition to gather signatures of name change proponents - just to name a few. But you can mark my words: we are well on our way to losing the taint of ‘chronic fatigue syndrome’ and erasing it from use forever.
One last thing - and this is important: The Campaign needs your support. Without it, patients will continue to be disparaged and belittled by ‘chronic fatigue syndrome’. Please volunteer a little of your time to help us make this thing a reality. E-mail us at CFSnameChange@prohealth.com. Working together, we can accomplish anything.
Wishing you the dignity of a fair name,