The ME/CFS Society of NSW Inc.

Youth is no shield against ME/CFS, and the condition can create special problems for children and teenagers. It's rarely found in under-fives but young teenagers seem particularly vulnerable. According to American paediatrician Dr David Bell, in the 5 to 12-year age group, onset is often slow - but in adolescents, it can be acute and linked with a flu-like illness. Many of the clinical symptoms are the same as for adults, but in children and teenagers the central nervous system disturbances can result in poor school performance.

Indeed, the effect of ME / CFS on a child's education can be enormous. For some students, the condition can be so disabling that they have many years of lengthy absences from school and do not finish their normal education. Even if this is not the case, poor concentration and impaired thinking skills can affect both learning ability and behaviour.

Classmates, too, can be cruel and, in adolescents, the urge to be part of the group and the pain of being "different" can add to the difficulties, giving rise to a great sense of isolation and loneliness and a serious loss of self esteem. However, it's important for young people affected by ME/CFS to maintain social contact with their peer group as much as possible - as, otherwise, there's a risk that social development may be impaired, sometimes severely. One way to keep contact is to find friends using support groups on the internet.

School and ME/CFS
Be open with the school from the start. In the past, misunderstanding and a reluctance by individuals and school bodies to accept ME/CFS as a real illness have led to situations where children have been labelled lazy or "school phobic". There have even been instances where parents have been accused of neglect for 'not sending' their children to school - and the last thing you all need at such a moment is a bitter battle with education authorities.

Be aware, too, that even when they are told of the diagnosis - and, unless they are told, they can't adapt their approach - teachers and other staff may be unaware of the implications or the unpredictability of this chronic condition in terms of school life. Perhaps other education options may need to be considered, such as flexibility of attendance, reduced subject load or even distance (correspondence school) education.

External Examinations
The Board of Studies recognises that tiredness and inability to concentrate are characteristic of ME/CFS. The Board offers a number of possible provision for ME/CFS students sitting the School Certificate (SC, year 10) and Higher School Certificate (HSC, year 12). These include ventilation, extra time to rest and/or work, bite-size food, a writer and, if necessary, home/hospital supervision. The minimum documentation required for special exam provisions, if you have ME/CFS, is a current medical report plus teacher comments from July of the SC or HSC year. For more information, contact the Special Provisions Unit on (02) 9367 8117 or (02) 9367 8325 or email specprovs@boardofstudies.nsw.edu.au.

The Society has formulated guidelines to help schools, teachers and parents, and can provide both support for students and their families and information for schools. Please use the link below to view and print the guidelines (approx 2-3 pages when printed).
Click here to view the Guidelines for Teachers who have Students with ME/CFS

There are also several adolescent and young adult support groups throughout Australia. For more information, please look at the "Other Australian Contacts" page.