This condition that I deal with every day, the one I have lived with for more than fifteen years, is one that doesn't even have an agreed upon title for itself.
Its official title is Chronic Fatigue Syndrome (CFS). It has been named as such by various medical authorities in the
and in Europe.
Many sufferers prefer the term ME. ME stands for Myalgic Encephalomyelitis. Myalgic refers to myalgia, which is basically muscle pain. Encephalomyelitis is another way of saying "inflammation of the brain and spinal cord".
I suspect that the reason many people choose to use this term is that Myalgic Encephalomyelitis sounds much more medical and serious than Chronic Fatigue Syndrome. It suggests a real condition, and this is what sufferers want above all, for it to be acknowledged as a real, serious, physical illness.
It is also true that CFS is favoured by the group who insist on seeing the illness as a psychiatric condition, and this does not endear this title to people who are fighting against this view of the illness.
People get very annoyed when discussing this matter. There is a way of thinking that sees the title Chronic Fatigue Syndrome as somehow disrespectful, that it implies that all we are is tired. ME, it is said, is closer to describing the severity and complexity of the illness.
Others maintain that CFS does exist, but that it is different to ME, maybe less severe, more easily treatable. I've read a number of discussions on Facebook pages, and on forums about this, and it does get pretty heated. People feel strongly about this topic.
My opinion is that ME is a terrible name for this condition in general. Moreover, it is utterly undescriptive of my particular situation. I don't have any muscle pain, and there are many other people who don't either. And there is no evidence to suggest that my brain and spinal cord - or anyone's brain and spinal cord - is inflamed.
The term ME gives almost no information about what this condition is like, describes only one symptom that is not even universal, and is misleading when it describes a physical effect that doesn't even exist.
So ME may sound more impressive, yet this doesn't make it more accurate. And it is important to be accurate. Chronic fatigue syndrome is at least true. People with this condition do have chronic fatigue. The term CFS may be inadequate, it may leave out a whole world of other symptoms, but at least it is not misleading. Myalgic Encephalomyelitis certainly is.
My preference would be for CFIDS - Chronic Fatigue and Immune Deficiency (or Dysfunction) Syndrome. It is used a little in the
, though used to be used more. US
CFIDS has the advantage of mentioning the immune system, which is a key component in causing symptoms, as well as the main symptom, fatigue. It certainly comes closer to describing my particular situation than any of the previous titles.
I suppose, though, that it is too much of a mouthful - even in the abbreviated version - to be a practical way of describing the condition. We need a title to be concise and easily explainable.
The truth is that there is no perfect way of naming this illness. There is no way of summing up the complexity and seriousness of what it's like to live with it, while also being accurate as to causes and dysfunction and symptoms. The best we can hope for is an approximation. CFS is unsatisfactory, but in my opinion it is better than ME, which describes nothing.
Until we understand the causes and mechanisms of the disease a little better we seem to be stuck with this unwieldy mish-mash of CFS/ME. The problem is that we lack any better way of describing the condition because we lack a basic understanding of what is behind it. Once that comes, let's hope we can get to a better way of naming what we have.