ME/CFS usually leads to a marked deterioration in the child’s school attendance and performance. As a result, children with ME/CFS often need special arrangements for attending school and completing their class work, assignments and exams.
A report by the UK Department of Health states that children with moderate-severe ME/CFS should not be expected to attend school, as doing so can cause severe relapses of their condition. Such children need home tutoring or distance (correspondence) learning.
In terms of performance, maths often causes the most problems because of the logical and sequential nature of the subject. However, difficulties with reading comprehension and writing are also common.
Inform school staff
All school staff involved with the child should understand the general nature of ME/CFS and the limitations it can place on a child, particularly in relation to mental and physical activity, the need for rest, and the dangers of over-exertion.
Staff should also have an up-to-date understanding of the child’s symptoms, what they can and cannot do, and how much activity they can manage safely (recognising that this varies from day to day).
Develop a realistic schooling plan
The child’s teachers and School Wellbeing Coordinator should work with the child and their family to develop a realistic plan for the child’s schooling.
The plan should
- be based on the child’s individualised treatment plan
- provide realistic goals
- be flexible
- recognise that educational opportunities are much broader and flexible now than they were in the past
- recognise that the child is the best judge of their capabilities at the time.
Schooling options include
- full-time study with reduced physical activity (e.g., no PE)
- part-time study with reduced hours (e.g., part days and/or a reduced number of days) and a reduced workload
- distance (correspondence) education
- home schooling
- a combination of the above
- postponing of formal education until the student is well enough to resume their studies.
Tips for helping students with their academic needs
Give the child clear directions as to what work is high priority and what is optional, recognising that the child must make the ultimate decision about what they do and when they do it, depending on how they feel.
Consider the likely impact of the school environment on the child and minimise that impact if possible. For example, schedule their classes on the ground floor rather than the first floor, so they don’t have to waste precious energy going up and down stairs.
Give the child unrestricted access to the sick bay for rests.
Consider giving the child two sets of texts — one for school and one for home — so they don’t have to carry heavy bags to and from school.
Tape important lessons and/or provide class notes for the child.
Provide whole lessons for the child to complete at home.
Consider having a designated place where the child’s teachers can leave work for the child, which the family collects and returns when completed. This could also be the place where any communications between school and home are exchanged.
Consider nominating a staff member, such as the Year Coordinator or Welfare Coordinator, to be the child’s contact person, and encourage all information and negotiations to be relayed through that person.
Work out the best way to assess the child’s academic progress.
Tips for helping students with their social and psychological needs
Trust the child, and be supportive and non-judgemental at all times.
If the child is not attending school regularly, keep in contact with them by email and/or telephone.
Talk with the child about their experiences of ME/CFS and its impact, and ask them what can be done to help them.
Encourage the child to stay at school during breaks, so they can socialise with their friends (in a quiet and comfortable place if necessary).
Be aware that the child is missing out on their family, social and recreational life as well as their school life.
Be aware that other students may need help to understand ME/CFS and its impact.
Encourage the child to access support networks, such as the ME/CFS Society, so they can make contact with other ME/CFS sufferers of their own age.
Link(s) to other useful online resources for schools on strategies in responding to a child/young person with this condition
Paediatric case definition: http://www.iacfsme.org/Portals/0/pdf/pediatriccasedefinitionshort.pdf
Education Department: www.vcaa.vic.edu.au/vce/exams/special provisions/schoolassess.html
Alison Hunter Memorial Foundation Education Guidelines: www.ahmf.org