The Lord is my shepherd; I shall not want.
Psalm 23:1
In 2004, a randomized clinical trial found that ‘In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with [ME] show markedly
American Journal of Occupational Therapy 58 [2004]: 35 – 43
higher levels of disability’.
Why another book about ME? That is a good question. My main reason for writing is the continuing lack of understanding surrounding ME. Even now, after so many years of illness, I still find that some people – even those who know me – are unaware of the impact and serious nature of ME: that at its worst it can be fatal. I get comments such as ‘I hope you’re keeping well’; ‘isn’t ME just about feeling tired?’; or ‘surely you could exercise yourself better?’ (when exercise is actually one of the worst things that a person with ME could do). So, as much as I really don’t like writing about myself, I felt that putting my own experiences of ME down on paper – and comparing them with how I was before my illness began -would be the best way to try to get across what this illness is really like. Hopefully, reading about an individual’s experience of ME rather than a list of medical facts will help people to understand more about this devastating disease and the effects it has on people’s lives.
Part of the problem, in the UK at least, is due to the continued portrayal of ME as a psychological problem, in spite of the overwhelming evidence to the contrary. After all, ME has been listed by the World Health Organization as a neurological condition since 1969, so it’s about time that it was treated like one! A few years ago, an ME researcher in America, Dr Suzanne Vernon, stated that there were over 5,000 peer-reviewed articles in the biomedical literature about ME – yet much of the evidence of the biomedical nature of ME has been suppressed or ignored in the UK, probably resulting in long- term harm to many patients who are incorrectly ‘treated’ by being told they need to exercise or undertake some kind of behavioural therapy. Imagine what would happen if MS or Motor Neurone Disease (MND) sufferers were told they needed ‘therapy’ as their first-line, or indeed only, treatment option? There would be an outcry, and rightly so. It should be the same with ME.
Whilst it is true that ME is a neurological condition, it is also true to describe it as a multi-system failure, as research has found that damage or problems affect virtually every part and system of the body. No amount of exercise or therapy is going to put those problems right – and studies have repeatedly found such to be harmful, particularly when it comes to ‘graded exercise therapy’.
It is for this reason that I am writing about my own experiences of ME over the last twenty-five years. I hope that this will be of some help, whether to others with ME or to those without it, to help them to understand a little more about the illness and its effects on daily life and living.
