By Erica Verrillo
In September 2013, the IOM was contracted by HHS to devise a new definition for chronic fatigue syndrome (CFS), the current CDC definition being considered too broad. It was also charged with providing a new name at its discretion. The IOM made its recommendations on Tuesday, February 10, 2015 in a report entitled, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” One of the recommendations of the report was to eliminate CFS and to replace it, as well as myalgic encephalomyelitis, with “systemic exertion intolerance disease” (SEID).
The IOM’s report on ME/CFS has generated a tremendous amount of media coverage (Time, CBS, NY Times Blog, ABC), as well as considerable discussion in the ME/CFS community. While many have welcomed the report’s emphasis on the serious nature of the disease, there have been some lingering doubts about the appropriateness of the new name.
(You can read and/or download the report as well as watch the video of the announcement HERE.)
A Brief History of the Name “Chronic Fatigue Syndrome”
In 1984, a mysterious illness struck residents of Incline Village, Nevada. At the time it was thought to be caused by Epstein-Barr virus (EBV), the herpesvirus that causes mononucleosis. For several years the disease was referred to as chronic EBV (CEBV). When EBV was disputed as the cause, Steven Straus of the NIH dubbed it “chronic fatigue syndrome” after its main presenting symptom. Straus was apparently unaware when he coined the term in 1988 that the disease already had a name that had been in use in the UK and Europe since 1959, “myalgic encephalomyelitis” (ME).
An outbreak of an illness identical to the one in Incline Village had struck the Royal Free Hospital in 1955. The attending physician of that outbreak was Dr. Melvin Ramsay, a doctor who not only documented the outbreak, but treated those who suffered from the disease for decades. The term he used for the disease was “myalgic encephalomyelitis,” in order to distinguish it from polioencephalomyelitis, the epidemic which had preceded the Royal Free outbreak.
Medical Impact of a Name
Virtually from the moment of its creation, patients, as well as specialists, voiced reservations about the name “chronic fatigue syndrome.” Not only did the name trivialize an illness that could be devastating for patients, but it departed from medical tradition.
Illnesses are not named after a single non-specific (common to many ailments) symptom. Critics pointed out that there is no “chronic coughing disease” (pneumonia), or “chronic forgetfulness disease” (Alzheimer’s). In addition to these drawbacks, the focus on fatigue drew attention away from one of the cardinal symptoms of the illness, post-exertional malaise (PEM). It also led to confusion and ultimately to the misdiagnosis of patients who had other conditions that present with chronic fatigue, such as MS and leukemia.
Public Reaction to SEID
While the ME/CFS community has universally welcomed the abandonment of CFS as a name for the disease, there have been mixed reactions to the IOM’s proposed new name, “systemic exertion intolerance disease” (SEID).
Those who like the new name have offered that “systemic” captures the fact that the disease affects multiple systems, and “exertion intolerance,” or PEM, is one of the cardinal symptoms of the disease. The fact that the IOM has defined the illness as a disease is especially important.
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Those who are critical of SEID have pointed out that every disease affects multiple systems, therefore the inclusion of “systemic” is meaningless. (The IOM’s previous renaming of Gulf War Illness as “chronic multi-symptom illness” was criticized for similar reasons.) They have also pointed out that “exertion intolerance” is non-specific. “Exercise intolerance” – as exertion intolerance is better known in the medical world – is a feature of cardiopulmonary diseases, hypothyroidism, cancer, and many other conditions. To make matters worse, “intolerance” can be easily interpreted by physicians as “aversion,” which increases the likelihood that patients will be referred to therapists and told to exercise.
Other Name Choices
The recommendations of the IOM are not public policy. No federal agency or department is obliged to follow them. In the past, the IOM has even retracted some of its recommendations. (After outcry from Gulf War veterans, “chronic multi-symptom illness” was rescinded by the IOM and replaced with Gulf War Illness.)
Some of the alternatives to both CFS and SEID that have been suggested are:
Myalgic Encephalomyelitis: This is the long-standing name for the disease. Cons: 1) CNS inflammation has not been definitively proven. 2) Not all patients experience pain. Pros: 1) The fact that inflammation of the CNS has not been definitively proven does not prevent adopting this name for historical continuity, much like the names malaria (which means “bad air”) and cancer (from karkinos, which means “crab” in Greek). 2) The IOM recognized that pain was a definitive symptom of the disease, and that it was experienced in various forms by 94% of patients. 3) Myalgic encephalomyelitis, as opposed to either “chronic fatigue” or “systemic exertion intolerance,” sounds like a serious medical illness.
Ramsay’s Disease: Honors Dr. Melvin Ramsay. Cons: 1) There already is a Hunt Ramsay Syndrome. 2) The WHO discourages naming illnesses after people. Pros: 1) There is a longstanding medical tradition of honoring physicians who first describe an illness. 2) Ramsay’s Disease makes no claim about the etiology of the disease, which has yet to be determined.
Nightingale’s Disease: Honors Florence Nightingale, the founder of the Red Cross, and sufferer of a chronic ailment similar to ME. Cons: 1) Florence Nightingale probably did not have ME, but a chronic bacterial infection. Pros: 1) Florence Nightingale is famous. 2) This name skirts the issue of brain inflammation.
Cheney Peterson Disease: The two American physicians who attended the Incline Village outbreak. Cons: Neither physician has wanted this disease to be named after them. Pros: This name skirts the issue of brain inflammation.
Incline Village Disease: Where the illness was formally identified in the US. Cons: 1) The outbreak in Incline Village was preceded by outbreaks in Los Angeles, London, Iceland, and various other locales, many of which had names associated with them. There does not seem to be a clear point of origin. 2) The state of Nevada would not welcome one of their tourist attractions being associated with a disease. Pros: This name skirts the issue of brain inflammation.
Why Your Opinion Matters
Dr. Leonard Jason has stressed that input from the community on what to name this illness is crucial. As he has pointed out, names can stigmatize. And now that we have been provided with this opportunity by the IOM report, we should work together to devise a name that is appropriate.
Whether it is your disease, or someone you know suffers from it, or this is simply a matter of concern to you, ProHealth would like your input on this important matter.
Please take our short poll (only three questions!) on the name change HERE.
Join the name change discussion on ProHealth’s Forums.