This is what it's like to suffer from severe Myalgic encephalomyelitis
(ME ),
Outrageous pain, terrible sound sensitivity, paralysis, acute sensitivity to touch, to food, to air pressure. Yet you wouldn't know it. ME is an exquisitely cruel, hidden disease. You might even be tempted to accuse her, as most of her GP's have done, of just being depressed. For mainstream medicine in this country is still of the opinion that what people like my wife most need is cognitive behaviour therapy. The only source of funding for ME research in the UK, the Linbury Trust, has given over £5 million since 1991 mainly to psychiatrists. With precious few results to show for it.
ME faces a slow agonising battle to be recognised as an organic , physical disease .It doesn't show up on the battery of conventional medical tests, leading professionals to conclude that it's all in the suffer's mind, rather than the tests themselves are too crude. To all extents and purposes you are a healthy functioning individual, remark the DSS doctors who turn up regularly in all their ignorance, every time we reapply for disability benefits.
To New Labour we are fraudesters that they are determined to catch at all costs. From the Benefit Integrity Project, soon after their first term , to a recent unannounced Labour-ordered appearance on the doorstep from a local Council Visiting Officer, we feel the wrath and power of this Government, like a slap around the face. If only they would put as much effort into treating my wife, into finding a cure.
It is estimated that in the UK there are over half a million
children and adults suffering from ME , with an estimated five
million cases
worldwide , mostly in the clean, ordered communities of the industrialised
West . It could be the price we pay, say researchers, for our
modern standards of hygiene . With 25 epidemics of ME documented
since 1965, the disease hits hardest those whose work involves
people especially teachers , health care and travel industry workers
. As Polio has declined ME has risen to assume the exact epidemic
and pandemic curve that Polio not so long ago vacated, to the
extent that it has now replaced Polio as the commonest chronic
neurological disease of the 21st century in the West. The annual
overall cost to the UK alone is estimated at £1000 million.
Yet annual spending on research in this country runs at only a couple of hundred thousand pounds, with no research yet being commisioned by this government into the physical causes of the disease. Despite official recognition of ME by the Department of Health in 1998, most sufferers receive little help. Treated often with derision or scorn by their GP's, hounded by a Benefit System which is stacked against them, glibly judged as deceitful by a world which looks on and sees nothing wrong , sufferers are simply left to get on with it and slowly forgotten. No treatment. No help.
Just unbearable, raging , unremitting pain day and night. My wife is a qualified teacher and social worker, I am a registered nurse. Our skills lie wasted , because literally nothing is being done . While the only knock on the door comes from a visiting benefits officer, to check up on us.
September 5 2001