The politics of Severe ME
Holding on by a thread, with poverty howling in your ear; and the lie that is your capacity to cope. Holding onto this cheap paintbrush, for it is all I have left now.
Dreams and schemes; you can’t give up.
I post my paintings, my experience of caring for someone with ME on the internet ; a scrap of naked defiance. Honest to God.
Five time more prevalent than AIDS, much bigger than lung cancer and breast cancer combined, much bigger than multiple sclerosis , diabetes, heart failure, kidney disease, or cystic fibrosis, ME has wrecked our life , my wife and I, for the last 16 years.
If you are a social worker, a nurse, a doctor a teacher, you are particularly at risk of being affected by this $20 billion a year, raging epidemic.
Not that you hear much about Myalgic Encephalomyelitis (ME).
ME; only a terminally ill cancer patient or an AIDS patient close to death, could possibly know what the degree of suffering is like. There is no cure, no known treatment. And it can kill.
It leaves you as functionally impaired as someone who is undergoing chemotherapy, for the rest of your life.
Try finding a GP, though, who even believes in it.
The Stone Bird- Try finding a single agent of the State that does not think you have a behavioural disorder. Try to avoid being sectioned and locked up, you wouldn’t believe it, in a psychiatric unit, without food and water.
There are well over 5000 published medical papers detailing the physical havoc this illness wracks on every single body system.
Yet the Government funds only psychiatric research. The Medical Research Council (MRC) erroneously classifies ME as a mental disorder, as does the Institute of Psychiatry.
Such are the vested interests at work , especially the power the mighty Medical Insurance Industry exercises over the Department of Works and Pensions (DWP), the MRC, all the Royal Colleges, and through the Science Media Centre, the media itself. Try finding a journalist at a biomedical ME conference.
It is hard to look at my wife in so much pain, so paralysed, so breathless, so numb, too sore to even touch; knowing full well that the reason nothing at all is being done for her , is because of the extraordinary influence of a minority group of UK mental health professionals , who have proven affiliations to corporate industry.
Against incontrovertible evidence to the contrary, these psychiatrists assert , mainly on personal opinion, that ME is only a “belief”, a “learned helplessness”, a “taking advantage of the sick role”, a “dysfunctional thinking”, a “psychosocial denial” .
So , in a darkened room since 1993; with nothing to ease the pain; just holding her, when I can, on 20p an hour as a full-time carer. This is what I try and paint, with oil that gets on my clothes , in my hair and onto my clenched fist.
