Dr Katherine Rowe outlines some practical strategies, devised in conjunction with a team from the Eastern Metropolitan Region, to guide schools in assisting students suffering from this prolonged and often mystifying illness.


Students with the illness have been identified in rural areas, provincial cities and all regions of metropolitan Melbourne. The average duration of CFS in adolescents is not known, but it is long and persistent, causing major disruption to the educational, social, physical and emotional development of young people. And it is not well understood in the community. School staff often misunderstand the fluctuating nature of the illness, for students who appear well for the hour or so they attend school can quickly relapse.

A multi-disciplinary approach, with close co-operation between students' families, physicians and educational services, is essential to prevent some of the many intractable problems associated with chronic illness. Between February 1989 and April 1992, the Eastern Metropolitan Regional team for Physically Disabled and Health Impaired Students received 43 referrals for Visiting Teacher (VT) support for students with CFS. A study of the 41 students eventually assisted by the team has shown good results in helping students maintain their education. The team has produced some practical strategies to give schools a better understanding of the condition and its management, and to help students in their gradual return to schooling.

Diagnosis is often delayed, and often families and schools do not fully understand what can be done to keep a CFS sufferer's education going. Close liason between students, parents, medical advisers and schools helped the Visiting Teachers and Regional Team to devise individual management programs which re-established and/or maintained the links between home and school, both academically and socially.

Such programs need to be flexible, to have achievable goals, and to encourage students to acknowledge their illness and take responsibility for their own progress, as well as to provide informed options and encourage risk-taking. Flexibility, patience, persistence and perseverance are all vital ingredients for maintaining such a program.

The educational program should be school-based as much as possible in order to re-establish links between home and school and to facilitate the ultimate return to school. In some cases, when there were long absences from school, students were enrolled with Long Distance Education (Correspondence School), or worked on a modified program combining Distance Education lessons with aspects of their own school program.

Strategies for getting back to school - one step at a time

• Establish one 'contact person' at school - encourage all information and negotiations to be relayed through this person, for example, year co-ordinator or student welfare co-ordinator. Of course, this person would be well informed about the illness and sensitive to the needs of the student with CFS.
  
  
• Before returning to school, if the student is well enough to attempt some school work, he or she should be allowed to make the ultimate decision about 'what', 'how much' and 'when'.
  
  
• If absence from school has been protracted then introduction to reading for purpose is a starting point. Break down the task. Set achievable goals, for instance, to read ten pages per day and write one sentence about each chapter. A tape-recorder may be used if the student experiences difficulty with handwriting or concentration.
  
  
• If the student is being seen regularly at home by the visiting teacher, it can be arranged that the visit occur at school (for instance, in the library), instead of at home. This can be extended by the student remaining at school for a free period following the session with the visiting teacher and eventually by the student staying during a recess or lunchtime to allow time for socialisation. Gradually the time spent within the school environment can be extended until some social confidence has returned and the student is feeling comfortable in the school setting.
  
  
• The next step is to introduce the student to the classroom. For this to succeed, allow the student to list all subjects offered at the year level in order of priority. (This will not necessarily be in order of academic importance). The subject with which they feel the most comfortable is the first one chosen. The teacher may be a major criterion on which to base a choice. The student may then attend on a sessional basis for that subject.
  
  
• If the student feels capable of attempting more than one subject, a realistic number can be negotiated. The number will vary according to the stamina of the individual. Chosen subjects should be matched with the school timetable to provide the basis for an individual program. It is important for the student to understand that attendance during scheduled subjects is mandatory unless the school is notified otherwise.
  
  
• Organising a timetable is crucial when attempting a controlled return to school. First, it provides the student with an expectation from the school that they will be in attendance during certain periods and second, it provides motivation for the student to make an effort to attend when the easier option may be to stay at home.
  
  
• A timetable helps to establish a daily and weekly routine. Success is more easily achieved if the student attends for specific subjects rather than for a predetermined time of the day (such as attending every morning regardless of which subject is time-tabled). Sessional attendance ensures some continuity of subject content as well as the chance for socialisation (other students quickly learn that the student attends all English classes but does not attend any music classes).
  
  
• The student should be encouraged to remain at school during the recess and lunch breaks. Most socialising occurs during these times, and friendship networks may have completely disintegrated during the period of absence, so being seen around the school yard is vital in re-establishing social links.
  
  
• Social skills may need revising, for example, participating in conversations, 'reading' social situations and handling comments from peers which may be interpreted as negative.
  
  
• When chosen subjects are not scheduled, it is preferable that the student be given the choice of either remaining at school to rest, or of going home and returning when a subject is being taught. This choice must be negotiated with the school and procedures put in place in order that attendance be monitored (for example, establishing a signing in/out register). Teachers should not be responsible for the transport of students to and from school.

At school - keeping going

• If regular attendance has been established but the student still experiences absences ranging from a couple of days to a couple of weeks the problem of 'catching up' occurs. The 'contact' person at the school could notify the appropriate staff of the absence and the possibility that the student may ask for notes. A manila folder (preferably of different colours) should be provided for each subject so that the student, upon return to school, can approach the appropriate staff for work missed. This work can then be completed at times that suit the individual.
  
  
• It is the student's responsibility to manage this strategy.
  
  
• Chronically ill students who have been absent from school for prolonged periods often exhibit a lack of initiative when they experience what they perceive as a 'difficult' situation. This requires sensitive handling. The student will often appear to be coping with school in general but 'panic syndrome' can overwhelm and jeopardise even the most carefully planned program. Students may not cope well with any criticism (perceived or real), or changes to routine (with or without prior notice), and may be sensitive about instructions and/or comments from teachers or peers.
  
  
• Allow students to accept responsibility for their own problem-solving. Ideas and options may be offered by someone working closely with the student, but the solution lies with the student.
  
  
• Take normal adolescent behaviour into consideration. Mood swings, mild depression, anger, frustration, the need to be alone and irrational behaviour can be part of the normal adolescentís quest for independence - accentuated by CFS but not necessarily part of it.
  
  
• Students with CFS will often overestimate their ability to handle both the illness and the rigours of school work. Success hinges on a common sense management plan for each individual student, taking into account their energy levels, their school work commitments and their recreational activities. Be realistic.
  
  
• Encourage the student to plan ahead.
  
  
• Encourage the use of a diary for social events as well as academic dates.
  
  
• There is often a 'pay back' period involved when choosing to attend social events. For example, if a student desperately wants to attend a particular rock concert it must be understood that a pay back period (feeling unwell for an unspecified period of time) will have to be endured. The pay back time could be as long as a week. The 'spend energy now - pay later' motto applies.
  
  
• Emphasise that educational opportunities are much broader now than in the past. There is greater educational flexibility in such areas as TAFE (Technical and Further Education) admissions, the availability of part-time courses and community education.
  
  
• Management plans must be reviewed regularly.

Many parents and schools were unaware that the Visiting Teachers and Regional Teams for Physically Disabled and Health Impaired Students could help students suffering from CFS. A partnership between health and educational professionals is a crucial first step in limiting the potentially disastrous effects of CFS.

Acknowledgment: extracts from Education Quarterly, Issue 9, 1992.

Reprinted from Emerge, June 1993.