Myalgic Encephalpmyelitis is a highly misunderstood condition that is characterised by a range of neurological, endocrine and cognitive disturbances often accompanied by profound fatigue and exhaustion – with loss of muscle power, pain and tenderness following normal physical or mental activity. M.E. is classified as a neurological disorder by the World Health Organisation (International Classification of Disease 10: G93.3).
Affecting all social classes and ethnic backgrounds, it is estimated that between 0.2% and 0.4% of the population have the illness. It can occur at any age with the greatest incidence being between the early twenties and mid forties. Women are most commonly affected.
Often sufferers are unable to work, with 25% acutely disabled. Many are wheelchair bound, housebound, bedbound and tube-fed. It impacts severely on the lives of sufferers and carers. Very little support is available and isolation and loss of hope often follow years of suffering.
It most commonly occurs in a sporadic form but there have been epidemic cases, such as the outbreak in the Royal Free Hospital, London, 1955.
No universal cure or treatment has as yet been found.
One of the most important things I can tell a newly diagnosed MEite is that M.E. is NOT Chronic Fatigue Syndrome. It is NOT Fibromyalgia. It is NOT Immune Dysfunction Syndrome and it most definitely is NOT Chronic Fatigue. If you believe you are suffering with M.E. then do not accept any of these as a diagnosis. The defining symptom of M.E. is not always fatigue but post-exertional fatigue/malaise (often 24-72 hours after activity) is a common characteristic.
The new fad in Britain in labelling the illness ME/CFS only seems to add to the confusion over what first appears to be a very new and misunderstood illness. However, it is in fact a very well defined neurological illness and has been recognised by the WHO since 1969; although it was in existence well before this. Much scientific research has been conducted with over 4,000 papers written. You will very rarely see or hear of this research because the psychological element, who have sadly hijacked the illness, deliberately overshadow anything with a biological basis. The reason for this is complicated but is related to money.
When doing your own research you must be careful to avoid getting caught up in the political web that surrounds M.E. Look for research papers that seek biological causes and avoid those that try to infer a psychological cause.
All articles that I personally write from now on will refer to the term M.E. or Myalgic Encephalomyelitis, not Chronic Fatigue Syndrome or Immune Dysfunction Syndrome. I am following Jodi Bassett’s lead (A HUMMINGBIRD’S GUIDE TO ME) because I feel it is time those of us that suffer from this hidden and ignored disease take a stand.
For more information on the controversy that surround this illness please take a look at A Hummingbird’s Guide to ME.
If you would like to comment on anything I have written please go to the We and ME chat forum. I’ll be checking in regularly and would love to get your thoughts on the subject.
For more detailed information including posts written by various writers visit my main Dancing with the Sandman website.
Andrea
