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: http://www.dorothywall.com