Educational Guidelines

Understanding and Accommodating ME/CFS

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

What is ME/CFS?

Myalgic Encephalomyelitis/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:

Neurological

  • dizziness
  • headache, pressure pain
  • noise and light sensitivity
  • cognition dysfunction (numerical, word recall, short-term memory, concentration)
  • visual disturbances (blurring, eye pain)
  • sleep disturbance
  • irritability, mood swings, distress, despair or depression (frequently parallel with disease fluctuation).
  • abrupt episodes of anxiety/panic

 

Musculoskeletal

  • exercise intolerance
  • post exertional malaise
  • muscle and/or joint pain
  • pallor
  • flushing
  • icy extremities, poor body temperature control
  • weakness
  • partial paralysis

Gastrointestinal

  • nausea, loss of appetite
  • diarrhoea
  • abdominal pain
  • reflux
  • food intolerances
  • marked weight change (loss or gain)

Generalised Symptoms

  • cardiac irregularities with associated chest pain
  • urinary frequency and burning
  • shortness of breath and breathing difficulties
  • chemical sensitivities
  • prone to classroom infections eg. colds and flu

The ME/CFS Child at School

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.

Coping with Absences from School

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:

Practical Help for Students with ME/CFS

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:

Key Points for Schools About ME/CFS

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 6132
North Sydney
NSW 2059

References

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.

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Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

 

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