The Right Name, the Right Strategy, the Right Time

Ever since 1988, when the Centers for Disease Control (CDC) first named our illness “chronic fatigue syndrome,” patient advocates have lambasted the label for trivializing a devastating illness and inviting psychiatric stigma.

“Yeah, I’m tired all the time, too,” has been the typical, dismissive response when people hear someone has chronic fatigue syndrome. The patient-led movement to change the name began the moment CFS was set in print and continues today.

This extraordinary, two-decade-long effort is a profound testament to the fact that, as research has shown (Jason et al., Amer J Comm Psych, 2002), the name matters, and has been a major obstacle to achieving the respect, research dollars and understanding this illness deserves.

Among the many efforts to change the name has been the attempt to work through the Chronic Fatigue Syndrome Coordinating Committee (CFSCC), established within the Department of Health and Human Services in 1996 to guide CFS policy. In 1998, in what seemed a sign of slow progress, the committee instituted a Name Change Workgroup to come up with criteria for a new name. But in 2003, after being reconstituted as the Chronic Fatigue Syndrome Advisory Committee (CFSAC), the committee rejected the Workgroup’s proposed name, and the effort, discouragingly, seemed at a stalemate.

Yet in the last few years, as new research has emerged and public and scientific attention has increased, there has been a revival of energy. Last spring, Rich Carson, founder of ProHealth, established the Fair Name Implementation Committee to build on this momentum. In May, to coincide with CFS Awareness Month, this committee will conduct a patient survey to gauge consensus on a new name, and then will mount a vigorous campaign to place the selected name in use.

The Right Name:

One obstacle to changing the name has been a lack of agreement by stakeholders on what the new name should be. There will never be a name that satisfies everyone, but myalgic encephalomyelitis (or myalgic encephalopathy), ME, continues to surface as the predominant choice, and the combined name ME/CFS, or CFS/ME, makes the most sense on every level.

ME suggests the seriousness of the disorder and reflects the common symptoms of muscle pain and brain dysfunction, making it diagnostically accurate. The term has a history in the medical literature, beginning with a 1956 editorial in the Lancet describing the disease. ME is already in use in Europe, New Zealand, Australia and Canada. And for those who feel myalgic encephalopathy is a more accurate term for this illness than myalgic encephalomyelitis, ME can be used just the same.

The International Association for Chronic Fatigue Syndrome, IACFS, has already changed its name to IACFS/ME, in accordance with international usage. A 2003 Canadian case definition uses the term ME/CFS as well, and the new UK National Health Service diagnosis & management guideline is for CFS/ME.

Some people object to combining ME with CFS, feeling that the trivializing name CFS, with its focus on fatigue, should be banished from use altogether. But the name CFS has achieved public, media and medical recognition over the last two decades, and is now established in over 3,000 articles in the scientific literature. Retaining it for at least an interim period will ease the transition to a new name and ensure that our significant progress in the research and governmental arenas will not be lost. Retaining CFS is also crucial in order to avoid problems with disability and medical insurance claims, an issue of huge importance to patients.

Some feel that the definitions of ME and CFS are too different to justify combining the names. Others feel that ME carries its own stigma, and adding another stigmatized name to CFS won’t help. And if the scientific community ever decides a name change is appropriate and suggests a different term, that would create further confusion. These are all understandable concerns, but they don’t outweigh the benefits of adopting ME/CFS, a move that will establish the seriousness of the illness while maintaining the substantial scientific and governmental recognition CFS has achieved over the past two decades.

The Right Strategy:

In the past, name-change advocates have worked both inside and outside the corridors of government. They’ve tried to work through the Department of Health and Human Services, to no avail. Many have simply adopted alternative names on their own, though lacking consensus and the endorsement of major players in the medical and scientific community, these efforts have remained marginal.

The new name-change movement learns from these mistakes. The beauty of the new name-change effort is that it doesn’t require buy-in from the physicians, researchers or officials who remain skeptical or resistant. This time, many of the major players in the ME/CFS community – physicians, researchers, advocates – are already on board. The patient community will have input on the name, hopefully coalescing around ME/CFS or CFS/ME. And an energetic campaign – utilizing the Internet, patient organizations and medical leaders – will launch the effort.

It also doesn’t matter whether or not the patient community is in total agreement. If a majority of patients, physicians and researchers use ME/CFS or CFS/ME, this shift will have an impact. Many patients have been saying for a long time, “Just do it!” A ground-swell of use of ME/CFS, or CFS/ME, will change the dynamic and send an important message to medical personnel, health officials, the media and the public.

The Right Time:

This is an opportune time to adopt a new name. There’s a sense in the patient community that we’ve reached a tipping point. Patients, advocates, physicians and researchers have long bemoaned the inadequacy of the name CFS, but more and more, people are ready to do something. The recent name change of the IACFS/ME signals this shift, as does the increased use of ME/CFS in many advocacy publications.

Moreover, the public awareness campaign launched by the CFIDS Association in 2006 in conjunction with the CDC has put CFS in the public spotlight as never before. The campaign, along with new research findings, has resulted in a large number of news articles that almost uniformly use the name CFS. We can take advantage of the wave of interest in CFS, and make sure that as many stories and articles as possible include the new name. As our illness gains increased visibility, we now have an important, even pivotal, opportunity to imprint ME/CFS in the public and medical mind. Let’s build on this national campaign to make a lasting change in how ME/CFS is viewed.

A Personal Note:

My writings on ME/CFS, including my book, Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome, have used the names CFIDS and CFS, reflecting the common usage of the time. I believe I’m not alone in sensing a vital shift within the patient and advocacy community, and in feeling that the time has come to call this illness ME/CFS. Let’s do it!

My thanks to Marly Silverman, Lenny Jason, and Cort Johnson, for their thoughtful comments on this article.


* Dorothy Wall is author of the highly acclaimed book Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (Southern Methodist University Press), winner of the “2007 Sand Castles Author and Book of the Year Award” from P.A.N.D.O.R.A. For more information:

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6 thoughts on “The Right Name, the Right Strategy, the Right Time”

  1. kflare says:

    Let’s DO it!


  2. balloony says:

    I have CFS. I have very little pain. The fatigue and the cognitive problems are my worst symptoms along with mood changes which are probably cause by brain chemistry. The M part of ME does describe my condition. I have worked hard to explain to friends and family about my illness. I call it Chronic Fatigue Syndrome. They understand what that means.
    How do I explain to them that I have a different illness now or at least an illness with a different name? Will that believe what I had in the past? Now I will sound mentally ill. It might not have been the best name, but the public campaign to make people understand what we deal with will all be for nothing because we don’t have CFS anymore. What we now have is ME/CFS. What does ME mean? I can’t even pronounce the full name of ME. How does using the two names help the matter?

  3. rosemaryu says:

    I developed CFS/FM in 1978 long before it became a household world. It was 12 years and 65+ different doctors (and almost as many incorrect diagnoses) later before I got an accurate diagnosis which was, in fact, Myalgic Encephalomyelitis. The origin of the CFS term, I believe, had political implications very deliberately designed to downplay the seriousness of the disease, and I believe many very ill patients were denied, not only credibility, but even treatment as a result. I once published an article criticizing the CFS designation for that reason and suggested that if they just wanted to call it some cutesy name “Chronic Deathly Ill Syndrome” would better describe the symptoms.

    However, my diagnosis did lead me to appropriate immune supportive treatment and I have been essentially symptom free for approximately ten years now. But I still take 40+ supplement pills per day, quite likely most of them not essential, but I am terrified to stop even one lest it turn out to be a crtical factor.

    “Myalgic Encephalomyelitis” therefore did serve me well and I heartily endorse it as the “new name”

  4. kurtrowley says:

    Considering the difficulties people with CFS already have in describing our illness to other people, imagine what we will face in attempting to describe our condition as ME. The problem I have with both names, CFS and ME, is that both names trivialize our primary dilemma, which is that the cause of our illness is still unknown. Additionally neither name communicates the wide range of known pathologies in CFS/ME, with symptoms that vary significantly from person to person.

    If a new name were adopted, and people were stuck on the idea of communicating the brain part of our pathology, I think the original name used in the UK, Encephalomyalgia (EM), is FAR superior to ME. This is a simpler and more logical way to say the same thing, that our brains are not functioning properly. Additionally it is reminiscent of Fibromyalgia, and I think people will have an easier time comprehending what type of disorder we have with EM.

    But really none of the names work, what about all of the other issues we face, what about the immune and detox/glutathione dysfunctions? What about adrenal/hormonal insufficiencies? What about the neurotoxin loads and dysautonomias? What about the new genetic studies? I don’t believe that any of the proposed names, including my own preference, EM, adequately communicates our situation to others. Until we have a firm understanding of the core causes and issues in CFS/ME, I don’t believe the time is right to change the CFS name, except perhaps to a name that communicates the provisional nature of our understanding of the core issues in CFS. CFS is really a temporary name, for an illness diagnosed by ruling out other disorders, and any new name should reflect that fact and not present a single pathology as if it is our entire problem, such as CFS/ME implies.

  5. Kathryn51 says:

    Hoooray for rosemaryu!!!! I’d like to know if she was living in the US at that time. I too believe CFS was deliberatly used by those DRs to downplay the seriousness of this disease.

    I bought 15 of Dorothy Wall’s books and also printed out 35 pages of vital information on ME/CFS/CFIDS and perposely used all the names. I sent them to people I thought would get the most from it. I then asked them to give it to other people that would benefit from reading the book and the information.

    The information I included was about ME and about CFS and about CFIDS and also a bit about FMS. I wanted them to know ALL the names that are being used so they could identify each one.

    If they did indeed read the book and the information packet then there are at least 15 more people that have been educated about this terrible debilitating disease.

    I myself was diagnosed with FM, CFIDS, SJORGRENS, IBS, MYTRAL VALVE PROLAPSE and more that usually come with this disease.

    Just as an after thought…nothing is going to help us until the doctors are educated about the disease. Every doctor in the world should be made to take courses in this disease so they can at least identify it before the patient is in the latter stages of it.

    Just my opinion,

  6. rowenailagan says:

    This article definitely hits home for me as a patient with ME/CFS. I have had to fight the stigma associated with its name (which trivializes the disease) and the challenge with getting a timely diagnosis (since much of what appears in our labs look “normal.”) I am a supporter of the nonprofit Solve ME/CFS Initiative (SMCI) and Advocacy and Engagement Manager Emily Taylor talked about this very topic in a medical sociology class at the University of Southern California recently. To watch a clip from Ms. Taylor’s lecture, please go to their website:

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