Myalgic Encephalomyelitis Or Chronic Fatigue: What’s In A Name?
Myalgic encephalomyelitis is a disease that was first identified in the 20th century and given this name after an early case where many people who worked together suffered severe symptoms that simply did not get better. In the USA it was first called ‘epidemic neuromyasthenia’ although the name myalgic encephalomyelitis was soon taken up there too.
However, the medical establishment soon dropped this name and switched to other names which still vary from country to country but all contain the words ‘chronic fatigue’ which is one of the symptoms.
The reason for the name change was the meaning of the names. The meaning of myalgic encephalomyelitis is muscle pain or tenderness (myalgia) and inflammation of the brain and spinal cord (encephalomyelitis). In some definitions of ME the E stood for ‘encephalopathy’ which means brain disease.
The problem with this name for the medical community is that after a while it was discovered that inflammation or disease in the brain was not always present. In fact, although an inability to concentrate is typical of the disorder (described by patients as ‘brain fog’), there is no identifiable brain inflammation or disease. Patients do have muscle pain or tenderness, at least some of the time, but the main symptom apart from ‘brain fog’ is a strange and overwhelming tiredness.
Because of this, the medical community including the World Health Organization has ruled that myalgic encephalomyelitis and myalgic encephalopathy are not accurate names. They cannot give it an accurate name because they do not know exactly what it is. So it is described by what doctors see as the main symptom: chronic (long-term) fatigue.
Myalgic encephalomyelitis or ME is still the name that is preferred by most patients and support organizations because ‘chronic fatigue syndrome’ is considered to trivialize the disorder. It does not sound like a real disease.
If you have tried telling friends that you have been diagnosed with ‘chronic fatigue syndrome’ you will know how disbelieving the reaction can be. Unless they happen to know about it already, they probably think you have just used long words to tell them you’re stressed or tired.
In the US, the disorder is sometimes now known as ‘chronic fatigue immune deficiency syndrome’. This is more acceptable for patients because it includes the important phrase ‘immune deficiency’ which reflects another aspect of the disease. Nevertheless support groups are working to have the name changed to ME/CFS or CFS/ME which are used in some other countries.
From a medical point of view, the problem with the name chronic fatigue syndrome is that this disorder has many more symptoms than tiredness. To call it chronic fatigue is almost as inaccurate as calling it myalgic encephalomyelitis, because it focuses on one symptom to the exclusion of all the others. So when the medical establishment insists on referring to our illness as ‘chronic fatigue’ it can seem that they are not taking the disease seriously.
A proper name for this life-changing disorder will only be found when research finally isolates something that defines it accurately. In the meantime, there is no reason why patients should not use whatever name they prefer when talking about their illness with their friends and family. So if you prefer the name myalgic encephalomyelitis, go ahead and use it, just as many support organizations do.
