Letter in The Oxford Times, 28 May 2015.
ME SURVEY UNDERWAY
Sir – Neil Riley (Letters, May 14) rightly draws our attention to the devastating illness ME/CFS. Here in Oxfordshire the patient support and campaign group is OMEGA (Oxfordshire ME Group for Action).
Research has indeed shown ME to be the biggest cause of long-term sickness absence from school and recent epidemiology shows that as many as one per cent of school age young people are affected by the illness.
Children can become so ill they are confined to bed and may have to be fed by tube. Fifty-seven per cent of children become bedridden at some stage and many more are too ill to go to school. We hear from many families about their distress over their child’s illness – made much worse by the lack of diagnosis and support. Early diagnosis is essential.
There is no dedicated service for children under 14 years old. We are carrying out a survey of families’ experiences of ME to support our current campaign to improve recognition and provision for children who get ME and to have the current service extended to include people under 14.
If ME/CFS is affecting you or a young person in your family there is still time to take part in our survey through our website http://omegaoxon.org (where you will also find links to our Facebook and Twitter).
We will use the results of the survey to show ‘evidence of need’ to schools and medical services. Or if you are a doctor or teacher and would like to know more about the most recent diagnostic criteria and recommendations for treatment contact us by email at firstname.lastname@example.org, or by post to 4 Bursill Road, Oxford OX3 8EW.
NEIL RILEY'S LETTER
Sir – We have an illness called Myalgic Encephalomyelitis. You may know it as ME or Chronic Fatigue Syndrome.
You will rarely see us. Like the iceberg below water, 90 per cent of us are invisible. We are at home, in bed. When you do see us, we look OK. Slow, pale and drawn, yes, but you will see no scars or bandages. Yet we are very ill.
Our quality of life is less than cancer and multiple sclerosis patients up to six months before their death but we are treated as though we just lack the will to do something.
When young, this devastating illness is the biggest cause of long-term absence from school. It robs us of our youth. When older, we lose our jobs, friends, and often our carers. That’s what our illness does.
May 10 is the start of ME Awareness Week. The ME Association, www.meassociation.org.uk, has a very simple message. “Take ME seriously”.
With your awareness and understanding, we can change the damaging perceptions of this illness and help to improve the lives of those who face it.
Chairman, The ME Association