Changing the Name "Chronic Fatigue Syndrome"

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Full Background about the issue

Introduction

Many patients feel that one of the greatest burdens of having chronic fatigue syndrome is the name of the illness. The word "fatigue" (which many patients refer to as the "F" word) indicates everyday tiredness. It reinforces negative perceptions that remain with the public and most medical doctors, despite a decade of steady, gradual research advances.

Testimony at San Francisco

I held a forum on changing the name on October 15 at the San Francisco CFS conference. Many patient leaders and medical professionals met there to discuss this issue. From those gathered, it was quickly clear that most favored a name change. Well known advocates including Tom Hennessy, Kim Kenney, Bonnie Gorman, RN, Gail Dahlen, RN, Katrina Berne, PhD, Gail Kansky, Sara Bass, Lea Rhodes, Jon Sterling and Gretchen Mason provided numerous accounts of the biasing impact the name has had on patients.

How Can We Change the Name?

The name chronic fatigue syndrome was officially chosen by scientists in 1988; at that time many of us had a sense that a research breakthrough -- and a better name -- was just around the corner. Nine years later the name is still with us. Most scientists oppose changing the name until the disease process is better understood or the cause is found. However, I believe there are ways to make a change now.

The CFS community could promote one of the less controversial alternative names already in use, such as a variant of "M.E." Another possibility is to promote an eponym (i.e., naming the illness after a well-known person) to be used along with the scientific name in medical literature. There are more than 100 diseases which have both a scientific name and an eponym. For example, amyotrophic lateral sclerosis (ALS) is also widely known as Lou Gehrig's disease and paralysis agitans is better known as Parkinson's disease.

Either an already-accepted name or an eponym could meet the urgent needs of the patient community about this issue, and should not prompt major objections from scientists which could impede any patient-led campaign to change the name. We should also urge scientists to consider officially adopting an eponym themselves or to pick a new scientific name which more appropriately describes the symptoms than CFS does. Either of these options would be a real change for the patients, yet would avoid prematurely identifying a pathology which scientists would clearly object to.

To this end, I am issuing a survey (see below) to solicit views on alternate scientific names and eponyms. Survey results will be published in a future CFS-NEWS and will be presented to Secretary for Health Dr. Donna Shalala, whose office is looking into the issue of changing the name.

If a pattern indicating consensus for a particular name emerges from the survey results, then various CFIDS organizations might join together to promote it as the new name to be used by the public and the media. If two or more names have strong support then a second survey may be needed. Lack of consensus will give us important information as well.

Government Action?

Secretary for Health Shalala must report to Congress before March 30 regarding the name change to comply with language included with the 1997 Appropriations Bill. Secretary Shalala oversees the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), both of which will have influence over any name change promoted by Secretary Shalala. The new CFS Coordinating Committee, under Secretary Shalala's jurisdiction, is expected to take up the name issue as one of its first orders of business.

A Plan of Action for Changing the Name

First, read this article and respond to the survey. Then write to Secretary Shalala and urge her to commit to changing the name. Make a strong case about how the name of this illness affects your life and that of others, and how it holds back medical research. Send your letter to:

Hon. Donna Shalala
Secretary of Health and Human Services
200 Independence Ave. SW
Washington, DC 20201

E-mail: HHSMAIL@OS.DHHS.GOV

(Please send your survey responses and specific suggestions for alternative names only to the address at the bottom of the survey.)

Similarly, please write to the American Association for Chronic Fatigue Syndrome (AACFS), a professional organization of doctors and researchers which sponsors bi-annual CFS medical conferences. Their support in changing the name would be influential. Write to them at:

Dr. Dedra Buchwald, President
AACFS
7 Van Buren Street
Albany NY 12206

E-mail: LBAACFS@AOL.COM

Comments from Panelists at the Change the Name Forum
San Francisco, October 15, 1996

Bonnie Gorman, RN, Massachusetts CFIDS Association: Multiple sclerosis was not addressed by medical clinicians or researchers, until its name was changed from "hysterical paralysis." Her organization's attempts at raising funds for CFIDS medical research are bearing out the same horrendous pattern. "The medical profession is very resistant to taking this illness seriously because of the name. They can't get past the name ... I'm absolutely convinced that if we cannot change the name, we will never be able to move forward."

Gail Dahlen, RN, Medical Professionals with CFIDS: "The name of this illness is an atrocity. It degrades us as patients. It degrades us as human beings ... Everything revolves around this name: research money, credibility, support from family, friends, neighbors, co-workers. It all revolves around this name. And every single word in this name -- chronic, fatigue and syndrome -- has to go."

Gail Kansky, Massachusetts CFIDS Association: (Comments were read on her behalf.) Changing the name might bring some confusion, as some claim, but we have been through several name changes before: the illness had no name until Chronic Epstein-Barr Virus was chosen in 1985 and it was changed to CFS/CFIDS in 1988. In each case, it has taken only a year or so to absorb the change. "There is no other illness whose name makes fun of the patient." She strongly recommended choosing the name "myalgic encephalopathy."

Katrina Berne, PhD, psychologist and author: "Patients, and our advocates, have spearheaded a lot of what's happened with this illness. And we will spearhead the movement to have a new name. We will rely on input from clinicians and researchers to identify the new name accurately. Ideally, we would wait until a marker or cause is identified. But the research won't be there, the funding won't be there, the research to find the evidence to change the name won't be there, unless we change the name."

Sara Bass, Connecticut CFIDS Association: The medical profession will only accept a new name if they have chosen it themselves. But their failure to educate the public about this illness has brought us all to the point where the patients must take up this issue.

Tom Hennessy, RESCIND: Anger about the name is as high as it's ever been during the eight years he has been fighting for a name change. He reminded everyone that many disability insurers have excluded CFS from standard coverage. "We are a major liability, and we've now become their target. We need to show government and big business that they are losing very productive people, and big tax revenues."

Alternative Names

At forums like the one held last October, there is strong consensus about the need to change the name, but just as often there is disagreement over what to change it to. Without greater unity in the promotion of an alternative name, we cannot launch an effective campaign to get the name changed and widely accepted. We would then have to continue to live with "chronic fatigue syndrome."

The survey (go to http://www.cfs-news.org/survey.htm) allows respondents to indicate varying levels of agreement for each name listed, as well as the option to include other alternatives. The survey was developed from suggestions that were solicited from readers of CFS-NEWS and other publications. The names listed all have strengths and weaknesses, some of which I've outlined below.

MYALGIC ENCEPHALOMYELITIS. This name has been used in scientific literature since 1956, although not as broadly as CFS, and has been widely accepted in most of the world outside of the U.S. This term is listed in the World Health Organization's classification of diseases. However, many scientists nowadays consider this name inaccurate and they discourage its broader use, since the "-itis" portion refers to inflammation of the brain, which is not sufficiently supported by medical evidence. The recent British Royal Colleges' Report recommends against using this name and recommends using CFS instead. Yet that report has been criticized by the journal Lancet as being biased towards psychiartic views.

MYALGIC ENCEPHALOPATHY. This new alternative has been discussed by several scientists recently. It allows use of the familiar term "M.E." yet omits "-itis" to which many scientists object (see above). This name has not been in use by scientists or patients. In addition, while "encephalopathy" means "brain disease" to American doctors, it has a much more serious connotation to British physicians, and there could be objections based on lack of scientific evidence for this term as well.

CFIDS, i.e., Chronic Fatigue and Immune Dysfunction Syndrome. This name appears increasingly in U.S. government documents, and is becoming more well known with the increasing influence of The CFIDS Association of America. As a longer variant of CFS, it tends to dilute the "F" word (fatigue). However, many patients feel that one of the main purposes of a change-the-name campaign is to eliminate the "F" word altogether. Also, many scientists claim that there is insufficient evidence to prove that immune dysfunction is a prominent characteristics of this disease. In addition, the name CFIDS is not used at all outside of the U.S., and it is only rarely used in the medical literature.

RAMSAY'S Syndrome, or Disease. The late A. Melvin Ramsay was a British physician who specialized in infectious diseases. He lectured in that field at the University of London and served as President of the Association for the Study of Infectious Diseases. He also served as a consultant to the British Ministry of Health regarding smallpox. Ramsay investigated some 300 cases of CFS/M.E. in the London Royal Free Hospital outbreak of 1955. Since that time he had been active in publishing research papers and making conference presentations about CFS/M.E. Ramsay coined the term "myalgic encephalomyelitis" which first appeared in the medical journal Lancet in 1956.

GILLIAM'S. Alexander G. Gilliam was a U.S. Public Health Service officer for 25 years who focused on infectious diseases and cancer epidemiology. His work included poliomyelitis, typhus and malaria, and as an NIH scientist he did work specifically on leukemia, cervical carcinoma, and lung and breast cancer. He later became a professor of epidemiology at his alma mater, Johns Hopkins University. Gilliam researched 198 cases of a CFS outbreak at the Los Angeles County General Hospital in 1934 and he published his findings on that outbreak in a 90-page book.

OSLER'S. Sir William Osler was a prominent turn-of-the-century physician who helped structure the methods of modern medicine. In his day he had been described as the "most influential physician in history". He wrote the authoritative textbook "The Principles and Practice of Medicine". Osler was a professor at several medical schools including Oxford, Johns Hopkins, and the University of Pennsylvania. Although Osler was not known for research about CFS, he was renowned for tackling the general problems of diagnosis, a challenge by no means foreign to CFS issues.

PETERSON, BELL, CHENEY. While it is unlikely that scientists will chose any of their living colleagues as the basis of a new name for the illness, many patients have nonetheless nominated some doctors that they greatly admire.

Drs. Dan Peterson and Paul Cheney treated patients during the 1984 CFS outbreak at Incline Village, Nevada and have since conducted and promoted much research into the illness. Dr. peterson has conducted trials of the experimental drug Ampligen. Dr. David Bell is a pediatrician who investigated the 1985 CFS outbreak in Lyndonville, New York and who helped to research the Defreitas virus in the late 1980s. Bell has published research about low blood volume anomalies in CFS, and he recently served on the faculty of Harvard Medical School.

NIGHTINGALE'S. (A general note: no historical figure has been definitively diagnosed with CFS/M.E. Purists may object to choosing any person in history, who may not have actually had the disease, as the basis for an eponym.) Florence Nightingale is a widely respected and world-renowned figure who founded the International Red Cross and the first formal school for nursing. For decades she had an undiagnosed, severely debilitating illness, whose symptoms were similar to CFS. Despite Nightingale's considerable talents and her personal character, many doubted that she had a physical illness. Her illness was quite controversial. A 1996 paper by D.A.B. Young which appeared in the British Medical Journal indicates that Nightingale's illness was likely to have been chronic brucellosis (a disease with symptoms similar to but not always identical to CFS). Nightingale's birthday, May 12, has been promoted as International CFIDS/M.E. Awareness Day.

In Conclusion

Patient groups have successfully pressed to change names of other illnesses. Victims of gay-related immunodeficiency, or GRID, demanded a change for the name of their disease. It's now called AIDS. We can succeed in changing chronic fatigue syndrome, too.

Note these important CFS information resources:

[CFS / M.E. Info page]    [CFS Frequently Asked Questions]    [CFS Quick Index]

This page is maintained by Roger Burns.
E-mail: cfs-news-request@maelstrom.stjohns.edu