One way of answering this question is to clarify what M.E. is not – and it is not “being tired all the time”.
M.E. is sometimes confused with ‘chronic fatigue syndrome’, a condition whose main symptom is fatigue, or lack of energy.
Fatigue is not so much a symptom but a consequence of having M.E., a disease which affects virtually all the bodily systems. Sufferers struggle to get through each day with simple tasks normally taken for granted, such as washing, dressing, preparing meals etc. Such activities, when achievable, leave patients utterly debilitated, in increased pain and feeling even more ill. Indeed, many sufferers are so badly affected by M.E. they are incapable of any independent living at all and are permanently bedbound, some having to be tube-fed in a soundproofed, darkened room.
Something often forgotten when it comes to diseases like M.E. is that it is not just a matter of being disabled by it; sufferers feel ill constantly, which, of course, affects every aspect of their daily existence, making interaction with the world very difficult, if not impossible, for much of the time.
One of the major symptoms of M.E. is pain, (‘myalgic’ refers to muscle pain) which can be so bad that it becomes overwhelming and patients literally cannot even think. Although any type of exertion can exacerbate it, especially in the muscles, pain can appear anywhere in the body (head, joints, soft tissue, nerves) at any time, and normal analgesics don’t usually help to relieve it.
The brain itself is affected (evidence is now emerging of the scarring of the brain tissue which occurs with Multiple Sclerosis, a related disease), leading to what is known in medical parlance as cognitive dysfunction and in common language as ‘brain fog’: sufferers have difficulty in finding words and experience problems with thinking straight or speaking.
A further consequence of M.E. is that balance and coordination can be so badly affected that mobility is seriously restricted. All of this, naturally, can lead to psychological and/or emotional problems, which also have to be overcome, as if the physical damage alone wasn’t difficult enough to deal with.
What causes M.E.?
One could ask, what causes a broken leg? No single cause of M.E. has been identified, although it is evident that in many cases the disease has been preceded by a viral or bacterial infection. Current thinking is that it is the result of a ‘hit-and-run’ infection, which leaves long term damage in its wake.
What about treatment?
At the moment there is no cure, and therefore no effective medical treatment, for M.E. The most sufferers can do for themselves for the time being is to learn to cope and manage as best as possible within an impoverished, disabling and restricted lifestyle.
But there is hope: medical research is slowly making progress in identifying what is actually wrong with the various parts of the body affected. The next step will be to find ways of repairing that damage. Not so long ago MS was referred to as ‘hysterical paralysis’ and the tremors produced by Parkinson’s also dismissed as being of a psychological origin. But the world is catching up at long last with the reality and nature of neurological diseases, including M.E.