What's In a Name?

Chronic fatigue syndrome patients have long hated the name given to the disease we suffer with daily. Why? Because it trivializes the seriousness of our illness. The disease is named for only one of its symptoms –– a symptom that most people experience at some point in their lives. If you asked the general public what it means to have chronic fatigue syndrome, most would reply, “People that have it are tired all the time.” Of course it is so much more than that. We deserve a name that reflects the seriousness and complexity of our illness.

Rich Carson, founder of ProHealth and CFS patient himself, has initiated a nationwide campaign to change the name of chronic fatigue syndrome. Following are excerpts from his “Founder’s Corner” column in ProHealth’s most recent CFS newsletters.

Chronic Fatigue is Not Chronic Fatigue Syndrome

“Sometimes I hear people refer to Chronic Fatigue Syndrome as "chronic fatigue," and that always bothers me. Why? Because calling a serious, complex, debilitating disease "chronic fatigue" is inaccurate and simply wrong. It patronizes patients and indicates a lack of knowledge, a lack of awareness about the disease, and a lack of sensitivity to the patients who suffer from it…

“Nobody is justified in calling CFS by the name of one of its symptoms. We don't call cancer, AIDS, Addison's, Parkinson's, MS, or hepatitis (etc.) chronic fatigue. And why not? Those diseases frequently cause chronic fatigue. I'll tell you why: The government has not adopted a suitable name for the disease, and patients tolerate it. We missed the boat years ago by succumbing to the medical establishment's inability to come up with a decent name…

The best name I have seen so far is Myalgic encephalomyelitis, the name most commonly used in Europe. It is not perfect, but it is better than Chronic Fatigue Syndrome - and at least it sounds like a real disease. The next best name is "Chronic Fatigue Immune Dysfunction Syndrome" (CFIDS) - a name that at least addresses the immune system part of the syndrome (but not the digestive, nervous, endocrine, muscle, and skeletal systems).”

Name Must be Changed to Gain Credibility

“Our last newsletter calling for changing the name "Chronic Fatigue Syndrome" (read FATIGUE) met with extraordinary support from the patient and medical communities. Patients and doctors alike rallied to the cause, and wrote to us to express their discontent with the present name. Most indicated they have long felt that the name "Chronic Fatigue Syndrome" trivializes the seriousness of the disease by calling it by the name of a symptom that is shared by almost everyone at some point in their life, and that a more appropriate name must be adopted in the United States…

“Changing the name is an idea that has waxed and waned over the past decade. Patients have complained bitterly about it for years. Doctors and researchers have never been happy with the name, and have called for a change. Even the largest CFS patient organizations have formed committees to discuss the topic. But nothing has changed.

“We feel it is imperative to take it upon ourselves to make this happen - for each other, for the countless patients who suffer in agony from the debilitating disease that bears such a trivializing name, and for our friends, doctors, and loved ones who sometimes bear the humility and embarrassment right along with us.

“The reservoir of knowledge and the resolve of our readers, site visitors, and bulletin board participants is formidable, and working together we are unstoppable. This is exactly what we need in order to get the job done. ProHealth is calling on you - on all of us - to do our part to change "Chronic Fatigue Syndrome" to something we can all agree on, and is today launching "Campaign for a Fair Name." That campaign begins here, today, and it will end - successfully - when the name is changed, once and for all.”

Campaign for a Fair Name

If the name chronic fatigue syndrome is going to be changed, it has to start with us, the patients. ProHealth has committed to providing much of the funding needed for the campaign but it’s going to take the dedication and drive of individuals like us to get the job done.

As Carson is working to gather a group of dedicated volunteers for this campaign, he outlines the first two steps to be addressed:

1. Establish a forum where patients can submit suggested names and discuss options.
2. Figure out how to allow patients to vote for the names. A non-profit organization may be used to handle the voting. ProHealth will not be involved in any official vote counting.

If you want to help, e-mail: CFSnamechange@prohealth.com. Please include your name and contact information. We need to work together to get the respect we deserve.

Sources: ProHealth. July 26, 2006 newsletter; ProHealth. August 9, 2006 newsletter; ProHealth. August 23, 2006 newsletter.