ME (Myalgic Encephalomyelitis) is one of the illnesses included among those for consideration during Invisible Illness Week (September 8-14, 2008). An amazing 96 per cent of all illness is invisible and an equally incredible percentage of people with ME remain hidden, unaccounted for and unrepresented.
Some of the reasons for an illness being invisible are obvious. People, who are too ill to go out, or only on occasion when they feel a little better, remain behind closed doors and, ironically, may contribute to it by staying in to avoid disbelief, ridicule and prejudice from an ignorant population and, sometimes, doctors who prefer to say they must be malingering or attention seeking rather than admit they do not understand it.
No one knows, for sure, how many people have ME but it is likely that it is towards the lower end of the UK Department of Health's estimate of between two and four people in 1,000. The range is probably so large because it also includes all illnesses with chronic fatigue as a symptom. The resulting total not only "hides" the number of ME sufferers within CFS (Chronic Fatigue Syndrome)/ME patients but distorts any conclusions from experiments in which they are used.
So, where are they? It is so important to find these missing people for a number of reasons, not least to know that they are not alone. We can't know how many people are in any distinct group until we define its characteristics (blue eyes, Sagittarians, over six feet tall etc.) and exclude those which do not fit (all other colour eyes, zodiac signs, under six feet tall etc).
The bigger the sample of people having the most pure definition, the better picture of what we are dealing with will emerge and the more likely we are to find a common physical cause which should, in turn, suggest effective treatment towards cure.
In the meantime, people with ME need advice about the best treatments available for symptoms such as pain, or to aid sleep and they need support with practical matters, including benefits and the opportunity to meet other people in the same boat.
ME Free For All.org is among those saying that we should make this Invisible Illness Week the one when we take ME off the list of invisible illnesses because it no longer remains behind closed doors.