Reference is being made to the report AD calls for more awareness on ‘invisible illnesses’ (TMID, 10 September).

M.E. (Myalgic Encephalomyelitis) is one of the illnesses included among those for consideration during Invisible Illness Week (held between 8-14 September). An amazing 96 per cent of all illness is invisible and an equally incredible percentage of people with M.E. 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 occasions 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 will know, for sure, how many people in Malta have M.E. but, if you follow the same principle as in the UK, it is likely that it is towards the lower end of our Department of Health’s estimate of between two and four people in 1,000, which, for Malta, would be about 800 people. The range is probably so large because it also includes all illnesses with chronic fatigue as a symptom and that doubles the number to 1,600. This larger total not only “hides” the number of M.E. sufferers within CFS (Chronic Fatigue Syndrome)/ME patients but distorts any conclusions from experiments in which they are used.

Now, if you only have one organisation for people with M.E. and only half of the sufferers joined it, you should expect at least 400 people. ME Sufferers Malta has far fewer than that. In the UK, we reckon that a single M.E. organisation ought to have at least 60,000 – 70,000, yet the biggest charity has only 7,500, or less than 10 per cent. It may be a similar proportion for Malta.

So, where are they? Where is the largest portion of people, perhaps by 9:1, with this illness? It’s unlikely that they don’t know there are organisations to represent them. They are well advertised, mentioned in articles about M.E., GPs know about them, so do many MPs.

It is so important to find these missing people for a number of reasons, not least to let them know 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, who 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 M.E. 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 M.E. off the list of invisible illnesses because it no longer remains behind closed doors.

Visit ME Sufferers Malta at www.mesufferersmalta.org and join them online, today, or write to ME Sufferers Malta, P O. Box 25, Pieta PTA 1310, Malta.

Dr John H Greensmith

Bristol

United Kingdom