M. Stephenson Educational Advisor
C. Hunter, A. Leggo, Alison Hunter Memorial Foundation

Myalgic Encephalopathy/Chronic Fatigue Syndrome is a complex disease affecting the brain and immune system. It is characterised by neurological, gastrointestinal and musculoskeletal symptoms, pain and disabling fatigue. It is a chronic disease which can result in major disruption to educational, social, physical and emotional development for many months or years. Onset of the syndrome may be sudden, triggered by infection, or gradual, where diagnosis may be missed and misinterpreted as school phobia, anxiety/depression or lack of motivation. Diagnosis is made by distinct clinical criteria.

Students with ME/CFS often experience physical and mental exhaustion which can be incapacitating. The student may suffer sudden onset of pain and incapacity with even minor mental/physical exertion.

ME/CFS is associated with a wide range of symptoms which vary in severity. Symptoms can vary daily or even hourly and include:

Students with ME/CFS are often very keen to return to school but become easily exhausted. Because children differ so much in the severity and range of their symptoms, it is important to discuss individual cases with parents. By doing so, schools will be able to utilise a student's strengths and be aware of his or her particular situation.

Some students with ME/CFS can appear pale and tried. Others may look quite well which can lead to misinterpretation and further misunderstanding of the student's true disability. As the student's condition can vary from day to day or even hour to hour, close discussions with both parents and student are essential for successful management.

ME/CFS can affect a student's self-esteem, self-image and social development. Many students experience social isolation and exclusion from peer contact because of their illness. It is possible for staff, peers and family to feel frustrated with students with ME/CFS. However, the student does not want to be ill and is equally frustrated and often bewildered. A supportive school community is most important; understanding and flexibility are essential. Counselling may be of benefit.

Long absences from school are common for students with ME/CFS. The profound and unique cognitive disability of ME/CFS impacts on new learning and memory i.e. education. There can be significant attention and concentration deficits in word finding, transposition, numeracy, visual/spacial perception, imputing, encoding and retrieval of information. These special problems and the individual differences between students with ME/CFS, mean that schools need to consider a range of educational options such as:

• time off until the student is well enough to resume normal schooling - education may need to be placed on hold;
• flexibility of attendance; that is reduced hours in primary school, reduced subject load in high school;
• distance education if the student is too ill to attend school on a regular basis, allowing the student to work at his or her own pace and avoid travel;
• combination of distance education and part-time attendance at school.

Support which accommodates their individual limitations is the essential anchor of good educational management for each student with ME/CFS. It is important to project a supportive, non-judgemental attitude.

Schools can assist students with ME/CFS in the following ways:

• clarify essential learning tasks and give clear boundaries about which tasks need not be done;
• arrange for missed work, notes, school newsletters and so on, to be made available for easy collection (e.g. a folder in the front office);
• tape important lessons;
• make educational videos or audiotapes available;
• ensure that all staff are aware of student's limitations, particularly in relation to exercise and sport, and the need for rest;
• minimise administrative requirements (e.g. presenting notes for being late);
• trust the student to know his or her limitations -discuss any concerns with parents;
• provision of quiet, well-ventilated rest area, ideally separate from infected students in sick-bay area;
• provide two sets of text; one for home and one for school, to avoid the need for heavy bags;
• recognise difficulties with mobility presented by widely-spaced school facilities, stairs, etc;
• minimise environmental and chemical sensitivities which can exacerbate symptoms: poor air quality e.g. gas heating, inadequately ventilated rooms, chemistry laboratory fumes, art mediums, glues, perfumes, etc.

• Substantial cognitive impairment impacts on new learning and memory and presents special problems with education.
• Students can experience abrupt fluctuations in their condition.
• Exceeding the student's limits of physical and mental exertion may result in relapse.
• Environmental and/chemical sensitivities e.g. gas heating, newly painted classrooms may induce relapse.
• The effects of relapse may be delayed.
• The temptation to push through and ignore the disease, unlike most other conditions, can have serious costs to health.
• Rest and careful management, medically and educationally, may impact on long-term prognosis.
• Believe the student - younger children are often unable to articulate their signs and symptoms and require special understanding and support.

There is the potential for serious damage to the student's self-image when confronted by prejudice and disbelief from institutions, peers, health professionals, teachers and at times, families.

For further information contact:

Educational Adviser
Alison Hunter Memorial Foundation
4-242 Ben Boyd Road
CREMORNE
NSW 2090

Phone/Fax 02 9953 9944

Alison Hunter Memorial Foundation
PO Box 2093
Bowral 2576

Phone (02) 4861 3244
Fax (02) 4861 325

Alison Hunter Memorial Foundation Educational Guidelines
Bell, Dr David 1994 The Doctor's Guide to Chronic Fatigue Syndrome Addison-Wesley New York
Hyde, Dr Byron 1992 The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome Nightingale Research Foundation
Issacs, Professor David 1996 ME/CFS, Physical as Anything New Children's Hospital.

Latest News | Research | Information | Advocacy | Conference | Guidelines