http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3966
[A version of this letter was published in the Times of Malta, and the Newcastle Journal, 3 September 2008; the Bristol Evening Post, 9 September 2008]
M.E. (Myalgic Encephalomyelitis) is one of the illnesses included amongst those for consideration during Invisible Illness Week (8 – 14 September 2008) blog here. An amazing 96% 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 knows, for sure, how many people have M.E. but it is likely that it is towards to lower end of the Department of Health's estimate of between 2 and 4 people in 1000, which would be about 120,000 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 240,000. 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.
If there were only one organisation for people with M.E. and only a half of sufferers joined it, we should expect at least 60,000-70,000. There are several organisations at national and local level but the biggest UK Charity has a membership of 7,500. Allowing for multiple membership of specialist groups for children and the severely affected it is doubtful that the total would be double this. You don't need a calculator to see that this is less that 10% of the M.E. population.
So, where are they? Where is the largest portion of people, 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. Perhaps they have been members at one time but are no longer.
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 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 amongst 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.
Yours sincerely
Dr John H Greensmith
ME Free For All.org
No comments:
Post a Comment