The Name Question

Many terms have been used to name the disease we refer to as 'ME'. Here is a short list of the main denominations.

Myalgic Encephalomyelitis (ME)

This term was originally coined to describe an epidemic outbreak that took place in London Royal Free Hospital in 1955.

Myalgic means muscle pain and encephalomyelitis, inflammation of the brain and spinal cord.

Some recent studies have suggested brain inflammation could play a role in the disease process, but this is far from being formally proven. Furthermore, not all patients experience muscle pain.

So, although this is patients’ preferred name, it only found little recognition in the medical community.

An alternative, Myalgic Encephalopathy, which is more generic and means brain pathology, is sometimes proposed.

Chronic Fatigue Syndrome (CFS)

This term was created in 1988 by a commission set up by the CDC. Since its creation, it has been highly criticized.

The use of the term 'fatigue' poses several problems:

• Fatigue is a non specific symptom, both present in a substantial number of diseases and experienced by everyone in their normal life.
• Fatigue is a very broad term, that can have several meanings (common daily tiredness, weakness, weariness, sleepiness, somnolence, exhaustion…)
• Post-exertional malaise, not fatigue, is the defining symptom of ME.

Numerous patients, advocates and researchers have highlighted the detrimental effects of this name.

Dr. Komaroff, himself member of the CDC commission, now regrets this choice. "The focus of the group was on creating a case definition," Komaroff said in Beyond the Data – a CDC broadcast. "I was part of that group. None of us was even thinking about the name and the name chronic fatigue syndrome was suggested. Everyone said 'sure, why not?'. I think that was a big mistake because the name, in my opinion and in the opinion of a lot of people, both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real."

"This label […] often elicits very trite comments, possibly intended to be humorous, like 'I’m tired, I must have that too,'" Pediatrician Peter Rowe explained in the NYT "Everybody’s had some experience of fatigue, but this is so much more than that."

"It's literally like calling Alzheimer's 'Chronic Forgetfulness Syndrome,'" Justin Reilly, a patients advocate, said in the Atlantic. "You'd have people constantly saying to patients, 'I sometimes forget where my keys are, I think I've got Chronic Forgetfulness Syndrome too.'"

The use of 'CFS' also undermines patients’ credibility in the eyes of health care professionals. In two studies, one questioning medical students and the other investigating undergraduate university students, participants were given a description of a patient with classic ME symptoms. Participants were then randomly assigned to different groups, the only difference being the labeling of the diagnosis (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome). The results of these two studies indicate that despite the similarity of symptoms, the case labelled as "ME" was taken much more seriously than the one associated with "CFS".

As a result, most patients are opposed to this name. In two surveys (see p. 35) conducted in the late 1990s in the United States, 85% and 92% of patients were in favor of a name change. These results were confirmed in a recent survey by Dr. Leonard Jason which showed that only 1% of participants appreciate the term.


Naming after people

To avoid the use of problematic descriptive names, some have proposed naming the disease after a person related to its history.
The most frequent proposals are:

• Ramsay’s disease (Dr. Melvin Ramsay was one of the first to define the disease, on which he worked from 1955 to his death in 1990)
  
• Nightingale's disease (referring to Florence Nightingale, a pioneer in modern nursing and the use of health statistics, who suffered at the end of her life from a disease very similar to ME)

However, in its latest guidelines, WHO specifies that "a disease name should consist of generic descriptive terms, based on the symptoms that the disease causes", and person’s names must be avoided (this does not apply to diseases that already have a name).


Systemic Exertion Intolerance Disease (SEID)

Conscious that the term Chronic Fatigue Syndrome "perpetuates misunderstanding of the illness and dismissive attitudes from health care providers and the public ", and that there is as yet no compelling evidence of brain inflammation in patients, members of the Institute of Medicine of the USA (IOM) panel proposed, in 2015, a new name for the disease: Systemic Exertion Intolerance Disease SEID. This name, they felt, "captures a central characteristic of the disease: the fact that exertion of any sort - physical, cognitive, or emotional -can adversely affect patients in many organ systems and in many aspects of their lives".

However, the name has not been really welcomed by many patients and doctors, who fear that exercise intolerance is hardly better perceived than chronic fatigue. Olga Khazan in her article in The Atlantic, is relaying this concern: "One can imagine, though, that name becoming the butt of jokes among couch potatoes who are otherwise healthy, just as “chronic fatigue” has among the mildly sleep-deprived."


ME/CFS

Faced with the impossibility of finding an accurate name, some have resorted to a compromise solution: the use of the term ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), until a better name can be found when the pathophysiology of the disease is better understood. Though unsatisfactory, this abbreviation is used by many patients charities, researchers and also by the American administration.

The reverse term, CFS/ME, which emphasizes CFS to the detriment of ME, is often used by BPS proponents.



Other names:

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS): name used by many US patients in the 1990’s. It is seldom employed now.
Neuro-endocrine-immune Dysfunction Syndrome (NDS): term recommended by the Name Change Workgroup (NCW) in 2003.
Post Viral Fatigue Syndrome (PVFS): generic term often used by health care professionals, although its definition is vague.
Yuppie flu: derogatory term created in the early 1980’s when some thought the disease was more common among middle/upper class, high achiever individuals. (Yuppie: Young Urban Professional). It is unfortunately still regularly referred to by journalists ("the disease formely know as"...).