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Why ME/CFS? A perfect name isn't necessary, but a respectable name is essential

  [ 1638 votes ]   [ 1 Comment ]
By Karen Lee Richards* • • July 10, 2007

A perfect name isn’t necessary, but a respectable name is essential.

Since early February 2007 when the CFS Name Change Advisory Board announced its decision to call for changing CFS to ME/CFS (and later, when they finally decided the 'ME' should stand for either myalgic encephalopathy or myalgic encephalomyelitis), there has been a flurry of comments, both pro and con. Acknowledging that there is no perfect name, in my opinion they made the best possible choice. Although I was not at the board meeting, I’d like to offer what I think was the rationale behind the selection of ME/CFS.

Why Change the Name?

The first question to consider is why do most of us want a name change? It’s because the name ‘chronic fatigue syndrome’ trivializes a serious illness by naming it for one of its symptoms, namely fatigue - a symptom most people experience at some time in their lives. Since CFS it is not a medical-sounding name, family members, friends, and even doctors tend not to take it seriously.

While we all want the best name possible, we have to be realistic. If we hold out for a name that adequately incorporates every facet and variation of the illness, we will be waiting many more years for an acceptable option. On the other hand, if we agree on a name that is not demeaning yet has a reasonable chance of being adopted, we can move on and focus our efforts on raising awareness and increasing research.

Why M.E.?

Some people from countries outside the U.S. have expressed confusion and disappointment at the choice of ME because that is what’s already being used in their country. (It should be noted that the Name Change Campaign was aimed at the United States, which perhaps should have been made clearer in the beginning.) The fact that ME is used around the world is precisely why it is a good choice. ME has been referenced in medical literature since 1956 and is still widely used in most of the world today. The history behind ME and its worldwide use will improve the likelihood of its acceptance by healthcare professionals.

Why Not a More Accurate Name?

A few patients have expressed concern that the term ME doesn’t address specific aspects of the disorder, such as immune system dysfunction. As research progresses, it is becoming apparent there are a number of subgroups under the larger umbrella of ME/CFS. Until the etiology of all of these variations is determined, it is impossible to come up with a name that would accurately define all facets of the illness.

The fact is many diseases have been named before their etiology was known. Malaria actually means ‘bad air’ and got its name because it was originally thought the disease was caused by breathing swamp gasses. And cancer literally means ‘crab.’ It is thought the name probably came from the appearance of the cut surface of a malignant tumor. So, it’s not essential for the name of an illness to describe it in detail. What is important is that the illness be taken seriously. A medical-sounding name like myalgic encephalopathy or myalgic encephalomyelitis has a better chance of being taken seriously than chronic fatigue syndrome, which just sounds like you’re tired.

A perfect name isn’t necessary but a respectable name is essential. Another important fact to know as we advocate for a name change is that there is precedent for changing a demeaning disease name to something more acceptable and respectful. Multiple sclerosis was originally known as hysterical paralysis; gay-related immune deficiency was changed to AIDS (acquired immune deficiency syndrome); Mongolian idiot syndrome became Down syndrome; and leprosy was renamed Hansen’s disease.

Why Keep CFS?

Given that CFS is such a trivializing, demeaning name, you may be asking why it is being kept as part of the new name. The main reason is for transitional purposes. CFS is listed in the ICD-9-CM codes. (ICD-9-CM stands for International Classification of Diseases, Ninth Revision, Clinical Modification.) This is the official system used to assign codes to diagnoses and procedures in the United States and is based on the World Health Organization’s classifications. One of the reasons for leaving CFS as part of the new name is that the same ICD-9-CM code can still be used.

Changing the name completely and suddenly dropping the name recognized in the ICD-9-CM codes could potentially cause patients serious problems with insurance and disability claims. Changes to the code do not come easily and usually take many years, but hopefully as ME/CFS gains acceptance, the code can be revised and the CFS can finally be dropped. In the meantime, using the combined form of ME/CFS will make for a smoother transition and less confusion than might be caused by a newly created name.

The Choice is Ours

A complete transition from CFS to ME will take time - probably several years. But the sooner we start, the sooner we’ll reach our goal. We are making definite progress. In years past, the name change efforts have been largely patient-driven. While many doctors and even some bureaucrats acknowledged the inadequacy of the name, most were unwilling to make a change. Now a group of top experts in the field have come together, agreed the time is right, and called for the name change.

Now it’s up to us. We can choose to hang on to our idealism and wait for the perfect name, or we can get behind the name that has been recommended and has a reasonable chance of being adopted. The more united we are as patients, the more seriously we will be taken. Change is difficult for most people, but if we work together and persist, change will come.

* Karen Lee Richards is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral's ChronicPainConnection ( Karen is co-founder with Lynne Matallana of the National Fibromyalgia Association (NFA) and was its vice-president for eight years. From 2002 through 2005 she was Executive Editor of Fibromyalgia AWARE, the first magazine devoted to Fibromyalgia and other invisible illnesses. See "Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome."

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Article Comments Post a Comment

name change discussion
Posted by: msummers
Mar 26, 2007
I sent this email to regarding the recent discussions of the name change of CFS to CFS/ME -- and then to ME alone. "Why are you trying to phase out "CFS?" I agree that it is not taken seriously with this acronym, but I have deblitating chronic fatigue WITHOUT any muscle pain whatsoever. If the name is fully changed to ME someday, then my diagnosis will pretty much be dissolved and/or not diagnosed because I don't have muscle/joint issues. It really concerns me that patients like me would get diagnosed as "depressed" or "sleep deprived" or some other fallacy because ME is primarily a muscle disease and there will be no other title for chronic fatigue only patients. Can you tell me how you have considered this or how you plan on avoiding such a travesty? PLEASE KEEP CFS (any way you say it) A SERIOUS ILLNESS NOT TO BE OVERSHADOWED BY ME!!! Thank you." What do you think?
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