Information for Those Working in the Education System, and for Those Affected to Share with Educators
Maintaining an education, be it in Primary, Secondary School or in a Tertiary Institution while being ill with ME/CFS is a challenging prospect for many reasons. Students quickly fall behind due to the number of days/weeks/months even years they must take off from attending normal school hours.
Even when at school, students will be physically and emotionally exhausted and be suffering cognitive problems, or “brain fog”, leading to poor learning. They will most often be feeling isolated from all the time they have taken off and be having serious problems reconnecting with their peers.
The following factsheet is aimed at Educators in Schools and Higher Education.
Dr Kathy Rowe’s (RCH) Study Findings and Advice
At a seminar supporting young people living with ME/CFS, held on 24 July 2014, run by Emerge Australia, Dr Kathy Rowe, a paediatrician at Melbourne’s Royal Children’s Hospital (RCH), spoke about the relationship between ME/CFS and education and the challenges therein. Dr Rowe has extensive experience working with young people with ME/CFS.
Dr Rowe explained that along with the delayed or severely interrupted academic progress, young people experience many challenges such as, an increased dependence on others such as their parents (right at the time when they are supposed to be learning a degree of independence), a lack of confidence, less opportunity to socialise, facing an uncertain future (however this is common to all with ME/CFS), and less capacity for sports and other hobbies.
The Good News: Young People Are More Likely Than Adults To Recover Fully
In her clinic at the RCH Dr Rowe followed up to 800 patients between 1991 and 2009 and found some promising results. For those who were followed for more than 12 years 88% reported recovery, where the average duration of the illness is 5 years (the range being 1 to 16 years).
Significantly, 90% of students who had ME/CFS during their schooling years went on to complete post-secondary education and were managing well in terms of leading “relatively normal lives”. It was found, the majority of young people in Dr Rowe’s study became strong, resilient and determined adults with very few dropping out of their courses.
So What Is Best Done to Help Achieve Educational Goals?
According to Dr Rowe, the aim should be to reduce the consequences of having a chronic illness and help young people manage their symptoms, their lifestyle and energy levels, accompanied by ample family and emotional support.
Teachers (and others) can play a role in discussing with a student was to achieve their aspirations and address potential obstacles. Questions to ask the young person include:
- What were their aspirations before they became unwell?
- What are the minimum requirements to achieve these aims?
- Who are the teachers they like and what subjects do they like?
- What subjects do they need to meet their goals?
- How does the timetable and the amount of time they can manage at school fit with these requirements?
Perhaps controversially for teachers, Dr Rowe observed that the quantity of “busy work” at school often overshadows quality work that can be achieved (i.e. quantity over quality seems to be valued). This suggests the need for more flexibility at school for young people with ME/CFS.
All school staff can do the following to help:
- Communicate about ME/CFS to all staff
- Provide a realistic and manageable study load
- Conduct regular meetings with the family and student
- Ensure students’ timetables, homework, and excursions are appropriate and manageable
- Make health the priority, believe the young person, and understand what they are hoping to achieve.
Engagement In Education Is Important for Social Development
As well as missing out on years of academic study, the more important thing to worry about according to Dr Rowe, is that they miss out on the social aspects that school offers. Dr Rowe found that years 7 to 10 could catch up on their education but many feel they have fallen behind with their peers in social settings.
Teachers, and others, should be supporting young peoples’ friendships and encouraging them to engage in education for its social aspects too.
- Chronic Illness Alliance has a page titled School Strategies for Schools and Teachers to help students with ME/CFS;
- The Victorian Government website the Better Health Channel has general advice for coping at school with a chronic illness.