Internet census of 'hidden' illness

A national charity is hoping that its new Web site will encourage parents of children with myalgic encephalomyelitis (ME) to take part in a nationwide census of the condition.

There has been little detailed research into the extent of the "hidden" illness of ME, which is thought to affect at least 25,000 school-age youngsters.

Some estimates say there may be four times as many with the debilitating illness.

Now the charity, Action for ME, based at Wells, Somerset, England, is trying to gain a better assessment of the problem in an appeal to parents when it shortly launches an Open Network facility for young victims.

It will offer a 24-hour telephone helpline and give practical advice on coping with the condition through an Internet site. The address is: http://www.afme.org.uk.

The Web site will feature a series of articles by leading researcher, Dr Elizabeth Dowsett, who has the UK's largest patient databank of ME sufferers.

At least 50% of pupils away from school on long-term sick leave are ME victims. A former headteacher and the charity's Child Services Development Officer, Jane Colby, said: "No one yet knows how widespread the illness is.

"The condition is not fully recognised as a reportable illness, and we think it should be.

"The parents' help could be vital in helping us further profile the situation and perhaps identify significant clusters.

"We need their help to push for better facilities and recognition."

Ms Colby and Miss Anna Grace Lidstone will jointly launch the Open Network within the next few weeks. They are both recovering from ME.

The free network will provide a newsletter, Tymes, edited by Miss Lidstone, and publish written work by affected children, either in book, magazine or Internet form.

Ms Colby said: "We are seeking to empower the young people by giving them opportunities to succeed. We want to know what they have achieved and want to show that they can still achieve despite being forced to be at home for long periods."