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 (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, or by post to 4 Bursill Road, Oxford OX3 8EW.

Patricia Wells