This disease is all too real

13th July 2001 at 01:00
Why did The TESS and Pat Sweeney collaborate to produce the sensationalised and demeaning piece on young people with ME, myalgic encephalopathy (June 15)?

Children with ME are clearly among the long-term absent from school, and although I could write at length about the debilitating and destructive horror of ME, I doubt if Mr Sweeney would take any notice, so I will be brief.

ME is not, as he suggests, a catch-all label for absence whether or not it is condoned by parents. Nor is it a psychosis. It is true that people with ME are frequently depressed but it is a genuine and disabling neurologically-determined illness that takes away precious youth, freedom, education and sometimes hope itself, and was designated a disease of the nervous system by the World Health Organisation in 1992.

Mr Sweeney acknowledges in his column that teachers have to manage symptoms of a variety of special needs without "knowing or understanding the source of the condition". I was under the impression that schools have a legal duty to understand and provide for special educational needs.

This duty does not equate with ignorance of the facts, even if this is hidden behind standard "knock the parents" rhetoric. For it is a fact that neither a mother's nor a father's encouragement will have any effect on an ill child's ability to overcome hisher ME symptoms and to drag himselfherself to school (or to sports events, to clubs, to family celebrations or to engage in any other normal youthful activities).

Val Hockey

Chief executive

ME Association

Corringham Road

Stanford le Hope

Essex

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