'You have the flu. And a hangover. And you've just run five miles. Now you know what it feels like to have ME.'
That is more or less the text of my favourite poster from Action for ME, and it really does give an idea of what this appalling, invasive, life-changing illness is like. ME is not just 'feeling tired', or 'needing a good rest'; it is, in part, an awful bone-weariness and pain that cannot be cured by sleep, exercise, or drugs, and can be brought on by something as simple as brushing one's teeth.
I say 'in part', because the fatigue referred to in its alternative name, Chronic Fatigue Syndrome, is only one of the symptoms. Another which seems to manifest itself in most PWME (People, or Person, With ME) is what we call 'brain fog', a feeling that your brain has turned to cotton-wool and cannot make connections between thoughts - even failing to process what someone else is saying. Again, it's like the feeling you get with flu, that your head is full of yuck and you can't think straight. But brain fog is much more severe in its effects, and it doesn't go away as quickly, if at all. It always seems to be lurking on the edge of consciousness, waiting for a PWME to overdo it or have a bad-health day.
There are numerous other recognised symptoms, which are listed in the Anne McIntyre book recommended below. In my own case, these are IBS (Irritable Bowel Syndrome), stomach pains, joint pains, muscle pains, dizziness, nausea, a feeling as though my veins are full of acid, emotional mood swings, insomnia, acute noise intolerance, headaches, poor circulation, difficulty in finding the right word when speaking or writing, poor temperature control, poor bladder control, difficulty in raising my arms above my head, fluid retention and difficulty in standing for any period of time.
As you can see, this is a condition which can affect every part of the body, and every area of a PWME's life. In my case, it results in my being confined to bed for roughly 22 hours per day.
ME is not a psychological condition; recent research has discovered blood abnormalities in PWME, and it is hoped that a diagnostic blood test may be available in the next few years. It has been recognised as a physiological condition by the World Health Organisation. A cause has still not been established, although most PWME have developed it after viral infection, prolonged stress, physical or mental trauma, or exposure to chemicals such as organo-phosphates.
Research is ongoing into the possible cause within the body, and suggestions have been made that it is due to reduced blood flow to the brain stem, a polio-like enterovirus (ie, one that is found in the gut) and acute candidiasis, among others. The truth is that we do not yet know what causes ME, how and why it develops in PWME, or how to cure it. GPs and specialists can prescribe drugs to control various symptoms, but they cannot cure the disease itself. Some PWME have found relief from Cognitive Behaviour Therapy, graded exercise, acupuncture, homeopathy, anti-candida diets and so on, but none of these work on all PWME, especially, it seems, if the PWME is severely affected.
Resources which I have found particularly helpful are
All views on this page are my own, and are not intended to represent the views of any medical person or institution, or of any ME organisation or support group.