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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, The New Yorker), 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 appreciated the fact 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.
Those who are critical of SEID have pointed out that every disease affects multiple systems, therefore the inclusion of “systemic” is meaningless. 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. (See my analysis of the report HERE.)
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 retracted 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. 4) Myalgic encephalomyelitis has been the name for this disease for 60 years.
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: Honors 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. A clear point of origin is hard to establish. 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
In a post published on the Oxford University Press blog Dr. Leonard Jason stressed that input from the community on what to name this illness is crucial. As he has pointed out, names can stigmatize. He proposed that with the publication of the IOM Report we have been provided an opportunity to work together to devise a name that is appropriate.
Adopting an appropriate name for this illness is important because a suitable name is a crucial part of getting recognition, funding, and treatment. As long as this disease is called "chronic fatigue syndrome" no one will take it seriously. No physician will consider it as a potentially life-threatening illness, and no researcher will be able to identify a cohort.
Without a clearly defined cohort of people who actually have the disease (as opposed to people who are chronically tired), there will be no funding, and without funding for clinical trials, there will be no treatment - of any kind.
The IOM got that much right. The question is whether SEID is any better. If it isn't, then we are stuck in the same situation we have been in over the past 27 years of "CFS."
Polls and Surveys
Recent results of polls have not favored SEID. Paradigm Change and MEAdvocacy ran a poll (March 1) that was strongly critical of the IOM's proposed name. Some of the preliminary comments were:
* If you read Ramsay’s definition of ME, it states that ME is multi system disease. This is my experience of the disease. Intolerant indicates that if the patient were given exercise therapy, their tolerance could be improved. The whole name centres around the exercise intolerance view, as CFS centred Round fatigue. There are so any other far more debilitating symptoms to ME and the worse the disease gets, the more symptoms and the more debilitating they are.
* It’s not clearly defined and “intolerance” sounds like exertion is something I’m not interested in as in laziness. I wasn’t lazy before getting this disease and now I don’t know day to day how I’ll feel. If I was a doctor and seeing this name I would think this person has psychological problems. It’s a step up from “CFS” but not by much.
* just change the name to M.E.
Health Rising also has conducted a poll in which SEID came in last of all preferred names. (Click HERE for the results.)
What do you think?
IOM's name change is not written in stone, It has not been formally adopted by HHS, or by any US Agency. Although the IOM has suggested a WHO code for SEID, the World Health Organization has not yet assigned one.
No matter what you think of the new name, you can make your voice heard through a variety of ongoing polls and surveys. Some of their results will be distributed to the media, and even more importantly to relevant government organizations (e.g. HHS, CFSAC).
ProHealth is currently running a three-question poll, "What name would YOU choose for CFS?"
The questions are:
1. Do you have ME or CFS? (Either diagnosis)
2. Do you think CFS should be replaced by a new name?
3. Which name do you prefer for this illness? (Names are listed.)
This poll will be open until March 21. You can take it HERE.
ME Association has a one-question poll. "Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?'
You can take the poll (and see the results) HERE.
Mass CFIDS and FM Association is running a more comprehensive survey, "What do you think about the IOM report?"
You may leave as long or short a comment as you wish. The results of this survey will be sent to CFSAC. The deadline is March 20, 2015. Take the survey HERE.
These are the five questions on the survey:
1) What are the positive things in the Report that we can use to move forward?
2) What questions do you have?
3) What goals would you like to see accomplished with regard to this illness in the next 3 - 5 years? Are these goals supported by the Report?
4) What parts of the Report are problematic for you?
5) Do you have other comments you would like to share?