A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name
By Karen Lee Richards, ChronicPainConnection Lead Expert
Much of the history of chronic fatigue syndrome revolves around the efforts to define it and the debates over what to call it. Other diseases that started out being called by one name were later renamed, either for the sake of medical accuracy or political correctness, but one has to wonder whether any other illness has ever had so many names or so much trouble finding its own identity.
In Search of an Identity
ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) has been called the “Disease of a Thousand Names.” While 1,000 may be a bit of an exaggeration, there are or have been a number of different names used to describe this controversial illness at various times and in various parts of the world, among them:
- Myalgic Encephalomyelitis
- Benign Myalgic Encephalomyelitis
- Epidemic Neuromyasthenia
- Chronic Epstein-Barr Virus Syndrome
- Chronic Mononucleosis Syndrome
- Raphe Nucleus Encephalopathy
- Low Natural Killer Cell Disease
- Atypical Poliomyelitis
- Epidemic Vasculitis,
- Chronic Fatigue Syndrome
- Post-Viral Fatigue Syndrome
- Chronic Fatigue Immune Dysfunction Syndrome
- Myalgic Encephalopathy
- Chronic Neuroendocrineimmune Dysfunction Syndrome
- Neuroendocrineimmune Dysfunction Syndrome
A few of the names have referred to the location of specific outbreaks:
- Iceland Disease
- Akureyri’s Disease
- Royal Free Disease
- Tapanui Flu
1860s - Dr. George Beard identified a syndrome (with many similarities to CFS) that he called neurasthenia.
1948 - An epidemic of an ME/CFS-type illness occurred in Akureyri, Iceland. Because the outbreak followed two clear cases of poliomyelitis, patients were first diagnosed with poliomyelitis but this was later discarded because no poliovirus was ever isolated in any of the patients.
1956 - ‘Myalgic encephalomyelitis’ (ME) was first defined in an editorial entitled, “A New Clinical Entity?” by A. Melvin Ramsay, MD, published in the Lancet. The article discussed several epidemic outbreaks that occurred in prior years.
1984 - The first documented clusters of CFS-like cases in the U.S. occurred in Lake Tahoe, Nev. and Lyndonville, N.Y.
1985 - The National Institute of Allergy and Infectious Diseases held a consensus conference at which the name ‘chronic Epstein-Barr virus’ (CEBV) was used, causing CEBV to become the name of choice for a short time. Medical journals began referring to CEBV as a legitimate illness.
1986 - In a paper giving a definitive description of ME, A. Melvin Ramsay, MD says that the syndrome known as myalgic encephalomyelitis in the UK is called ‘epidemic neuromyasthenia’ in the USA.
1987 - The CEBV Association was founded by Marc Iverson and Alan Goldberg. In the late '80s the group changed its name to The CFIDS Association of America at the suggestion of immunologist Seymour Grufferman who suggested the name ‘chronic fatigue immune dysfunction syndrome’ to reflect the immune abnormalities and lessen the emphasis on fatigue.
1988 - The U.S. Centers for Disease Control and Prevention (CDC) chose to name this mysterious illness ‘chronic fatigue syndrome’ and published a case definition (the “Holmes criteria”) to be used for research. Several other more medical-sounding names were considered but dismissed because they lacked definitive proof of a causal agent. As Dorothy Wall observed in her book, Encounters with the Invisible, “It was one of those seemingly innocuous bureaucratic acts with untold consequences.”
1990 - The November issue of Newsweek featured a cover story on CFS, nicknaming it “yuppie flu” based on the erroneous assumption that it mainly affected upper class women. While the article certainly brought CFS to the forefront, it probably did more harm than good. By implying that it was a form of malingering or burnout, the article contributed to the public’s perception of CFS as a psychosomatic condition.
1993 - The CDC put together a panel of 11 federal scientists to hear and consider arguments related to reworking the definition of CFS and changing the name of the illness. Unfortunately, none of the panel members actually treated CFS patients, so the pleas for a name change fell on deaf ears.
1994 - The CDC issued a revised case definition for CFS, known as the Fukuda or research definition. Although they predictably did not change the name, they did acknowledge its inadequacy.
1995 - The first Congressional briefings about CFS were held and, for the first time, the U.S. Department of Health and Human Services (HHS) added patient advocates to its CFS Coordinating Committee (CFSCC).
1996 - Congress asked the Secretary of HHS to consider renaming CFS.
1997 - Both the CFIDS Association and CFS-News.org conducted surveys to determine patients’ feelings about the name-change question. In both surveys an overwhelming majority of patients wanted a name change. Most seem to prefer either myalgic encephalomyelitis or myalgic encephalopathy, both of which use the acronym ME.
1999 - A study at DePaul University suggested “that medical trainees perceive the ME label as being indicative of a more chronic and debilitating illness as compared to the labels of CFS or FN.” In the study, medical trainees were presented with identical case studies of patients with classic CFS symptoms. They were told the patient had myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), or Florence Nightingale disease (FN). Trainees who received the cases labeled CFS were less likely to assign a medical cause and more likely to prescribe psychotherapy and/or psychotropic drugs. Of trainees who were told the patient had FN or CFS, more than 40 percent believed the patient was likely to get better. Of those who were told the patient had ME, only 16 percent thought the patient would improve.
2000 - The CDC convened a case-definition workshop commissioned with exploring the challenges of studying and defining CFS. The CFSCC formed a name-change workgroup who began to identify possible alternative names.
2001 - The CFSCC established a workgroup to study the CFS name-change issues but it was dissolved prior to submitting its recommendations.
2003 - Although the CFSCC was dissolved, the written recommendations of its 2001 name-change workgroup were submitted to the new Chronic Fatigue Syndrome Advisory Committee (CFSAC). They recommended a new umbrella term, ‘neuroendocrineimmune dysfunction syndrome’ (NDS) along with suggestions for sub-groups for the illness. In December, the CFSAC issued their “Position Statement Concerning the Name Change Proposal.” The first four points detailed their agreement that the name ‘chronic fatigue syndrome’ is a poor and inappropriate choice. However, their fifth point concluded that this was not the appropriate time to change the name and was followed by seven reasons for this decision.
2006 - On August 9, Rich Carson, CFS patient and founder of ProHealth, Inc., launched the “Campaign for a Fair Name” and vowed not to stop until the name was changed once and for all. He began organizing a “dream team” of seven to 10 of the world’s leading CFS researchers to guide the patient community in developing a name that would be perceived as legitimate and acceptable to the medical establishment.
ME or ME?
Although dozens of different names have been suggested to replace CFS, the discussion always seems to come back to ME. The acronym ME can actually stand for either myalgic encephalomyelitis or myalgic encephalopathy. The term myalgic encephalomyelitis means muscle pain accompanied by inflammation of the brain and spinal cord, while myalgic encephalopathy indicates muscle pain and damage to the brain and spinal cord of unknown origin.
It’s not surprising that ME continues to rise to the top of the name-change pool. It has been used in medical literature for 50 years, which automatically gives it more familiarity and credibility in the medical community. Another point in ME’s favor is the fact that it is widely used in Europe and throughout much of the world (except for the U.S.).
What’s in a Name?
Thinking about the name chronic fatigue syndrome brings to mind two well-known quotes:
More than 400 years ago in his play Romeo and Juliet William Shakespeare wrote, “What’s in a name? That which we call a rose by any other name would smell as sweet.” But I daresay if that rose was named ‘thorny branch’ after one of its prominent characteristics, few people would bother to smell it and discover its beautiful fragrance. Unfortunately the name chronic fatigue syndrome is the equivalent of thorny branch. Because CFS doesn’t sound all that bad, it is difficult to get the medical community, government and general public to look deeper and discover just how serious the illness is.
Today a popular marketing mantra says, “Perception is reality.” While perception may not be actual reality (i.e., truth), it can drastically affect certain aspects of reality. For example, the perception that CFS is not a serious illness does not change the reality of its debilitating effects on patients. It does, however, affect how much money is allocated for research, whether disability benefits are awarded, and whether patients are treated as malingerers or as seriously ill individuals. The perception engendered by a name that trivializes the illness results in the reality of inadequate care and treatment for its sufferers.
And so the battle rages on. There are strong, even passionate, feelings on every side of this issue. The one thing just about every CFS patient agrees on, though, is that the name needs to change. It’s impossible to please everyone, so no matter what name is ultimately selected, there will be a few who don’t like it. But in the end, most believe almost anything would be better than chronic fatigue syndrome.
Reprinted with permission of ProHealth, Inc. from “FM Research and Treatment News,” 1/3/07.
Karen is the Co-Founder of the National Fibromyalgia Association. She wrote for HealthCentral as a patient expert for Pain Management.