The information on this page is designed to help support and advocate for young people with encephalomyelitis/chronic fatigue syndrome ME/CFS or long COVID at school. We consulted with parents of children and young people with ME/CFS, teachers and medical professionals while developing this information.
You can share this information with your young person’s school and doctor so that everyone can work together.
What is ME/CFS and long COVID
ME/CFS is a chronic and disabling disease that affects many systems of the body. These include, but are not limited to, the brain, muscles, digestive, immune and cardiac systems. People of all ages can get ME/CFS, including children and young people. ME/CFS often starts with an infection, such as the flu or COVID-19, but it is not always clear what the trigger is.[1] Approximately 50% of people diagnosed with long COVID meet the criteria for ME/CFS.[2] This fact sheet includes suggestions that may also be useful for children and young people experiencing long COVID, especially those who experience a symptom known as post-exertional malaise (PEM), which is explained in the next. section.
How does ME/CFS or long COVID affect my child’s ability to attend school?
An Existence Project is a short stop-motion animation about what it is like to live with mild or moderate ME/CFS. It was created by Inga Topolnicki using handmade watercolour paper props.
ME and PEM is a 3-minute clip that will help you understand post-exertional malaise (PEM) and how it is different to faigue. (Norwegian ME Association)
ME/CFS, long COVID and mental health
ME/CFS and long COVID are biomedical illnesses. They are not mental health conditions, nor are they caused by problems with how someone thinks about their body or their symptoms. Misunderstanding the nature of these conditions can create distress or lead to poor management plans for your child or young person.
Living with a chronic illness that involves missing out on normal life activities may lead to mental health issues like depression or anxiety, but these are not the cause of the condition.
Supporting wellbeing is an important part of any study plan when talking with your doctor and school.
How does ME/CFS or long Covid affect a student's ability to go to school?
There are many ways that ME/CFS or long COVID can affect school participation, including:
- Attendance and participation – often, going to school full time can be too much for students with ME/CFS and long COVID. For older students, also trying to keep up with all their homework can be beyond their capacity. It is important to find a level of attendance and participation that your child can undertake fairly consistently. Going to school for three half days a week, and being able to do this most weeks, is better than trying to attend full time and only lasting a week. Students should never be pressured to participate in sports or to push their limits. ME/CFS is not being ‘unfit’. Pushing past their limits can cause severe relapses or a ‘crash’ lasting days, weeks, months or years
- Concentration, completing work and exams – sometimes referred to as ‘brain fog’, cognitive problems (problems with thinking, memory and concentration) can make school very hard for students with ME/CFS or long COVID. Cognitive problems can be made worse by things such as pain, poor sleep, orthostatic stress (where symptoms are made worse with sitting or standing), noise or the normal interactions involved with school. Cognitive activity can cause PEM and needs to be paced just like physical activity
- Relationships with friends and other students at school – your child or young person may find it hard to explain to their friends and other students why they are often away from school, why they require things like a wheelchair, or why they might not participate in sport or social activities outside school
- Graduation – feedback from parents and past students suggests that by making a long-term plan for graduation, and exploring alternative options and routes to success can provide a positive, and successful school experience through to graduation. It might look very different to the path that most students take, and require some creativity and flexibility to get there. Talking with other parents can be very helpful.
Even if attendance is unconventional, such as limited attendance and subjects, remaining in contact with the school has been identified as a key factor in children and teenagers being able to do well over time4. Some may be too unwell to continue with any schooling, but any engagement with school, such as seeing friends during lunchtime, will be helpful, even if they don’t return to full health.
Understanding attendance problems at school
Sometimes ME/CFS or long COVID can be misdiagnosed as school refusal or labelled as laziness when symptoms, such as PEM or the fluctuating nature of ME/CFS, are not understood. Unlike school refusal, students with these conditions often have the same difficulty completing activities on weekends as during the week, though sometimes symptoms can improve during school holidays, because energy is not being used for school activities.
Education adjustments for ME/CFS or long COVID
Specific adjustments for ME/CFS or long COVID symptoms
Your child’s rights at school
All children and young people in Australia have the right to an education, which also includes the social connections and experiences that are part of growing up.
Education providers have a legal obligation under both the:
- Disability Discrimination Act 1992 (the Act)
- Disability Standards for Education 2005 (the Standards)
This means that when something such as a serious illness like ME/CFS or long COVID limits a child or young person’s ability to attend school full time, or they struggle with the normal workload at their school, the school is required to make changes so that your child can ‘access and participate in education on the same basis as students without disability’. These are called ‘reasonable adjustments’.
When talking with your school about making adjustments, you might like to provide:
- Information about ME/CFS or long COVID and how it impacts their ability to go to school. The school may ask for some information from your treating doctor
- Your child or young person’s thoughts and wishes about school
- Some suggestions of adjustments the school could make and how they might help.
The school will also need to look at potential costs and how to cover these costs.
Each state and territory, and each school, will have a slightly different process. However, all education providers must comply with the Act and the Standards.
If you are having problems talking with your school about adjustments, some steps you could take include:
- Escalating the matter to the school principal
- Lodging a complaint with the Education Department in your state or territory, if the school is unwilling to help
- Lodging a complaint with the Australian Human Rights Commission (AHRC).
The Australian Government provides information about how schools can support students with a disability.
Case study – a school student’s experience
Jess is a Year 9 student who developed ME/CFS after a bout of glandular fever. She experiences many different symptoms, including dizziness, muscle weakness, sore throat, difficulty concentrating, headaches, and sensitivity to light and noise. These symptoms have become her new normal. She’s still learning to navigate her reduced energy levels and is now trying to return to school.
Jess manages to get through one day of school, but it depletes her energy reserve. The following day, she finds it incredibly challenging to even get out of bed, due to extreme muscle weakness. She can barely move, is even more sensitive to light and sound than usual, and has trouble speaking or even thinking clearly. It takes Jess several days of rest before her symptoms go back to her usual level and she can try going to school again. This pattern of exertion, then symptoms getting worse, followed by days or weeks to recover, is typical of PEM.
Despite Jess trying to explain her condition to the school, she has been mislabelled as having school refusal, because her school doesn’t understand that Jess experiences PEM when she goes beyond her energy limits. The school focuses on getting Jess back to school full time, without any adjustments for her condition. Jess ends up getting worse, until she is barely able to go to school at all.
The lack of understanding from her school and having her symptoms misinterpreted as laziness or refusal to participate leads her to withdraw and become isolated.
Jess has always been a good student and wants to be able to go to school. She worries about falling behind and that she’s missing out on things her friends are doing. But she hates feeling sick for days after she has been to school, and gets upset when her teachers treat her like she’s just lazy or exaggerating.
Jess and her parents meet with her teachers and provide them with some information about ME/CFS, including a letter from her doctor about how it affects Jess. Together, they work through the adjustments table and discuss what would help Jess re-engage with school.
Over several months, Jess is gradually able to return to school part time. She does half days and is able to have a rest break at school when she needs it. Her parents have regular contact with her teachers, and school work is sent to Jess for her to complete at home when she can’t go to school. She uses a laptop to write her exams and has a half-hour break halfway through.
Jess’s plan includes contact with her friends to help reduce her isolation and maintain her relationships.
Exercise as treatment for ME/CFS and long COVID
Evidence shows that graded exercise therapy (GET) is not an effective treatment for ME/CFS or long COVID, when post-exertional malaise (PEM) is present. Given the consistent reports of harm from patients, GET also carries a significant risk.
Free online education portal
Self-paced education modules are designed to help people with ME/CFS and long COVID and their supporters understand the basics of ME/CFS, post-exertional malaise (PEM), energy management and pacing.
Imagine podcast
Emerge Australia’s Imagine Podcast series provides conversations with patients, carers, practitioners, academics and leaders immersed in the challenges of ME/CFS and long COVID.
Reference
- Centers for Disease Control and Prevention, myalgic encephalomyelitis/chronic fatigue syndrome, https://www.cdc.gov/me-cfs/index.html. Kedor, C, Freitag, H, Meyer-Arndt, L. et al. (2022) ‘A prospective observational study of post-COVID-19 chronic fatigue syndrome following the first pandemic wave in Germany and biomarkers associated with symptom severity’, Nature Communications, vol. 13, https://doi.org/10.1038/s41467-022-32507-6.
- Rowe, K (2020) ‘Paediatric patients with myalgic encephalomyelitis/chronic fatigue syndrome value understanding and help to move on with their lives’, Acata Paediatrica, vol. 109(4), pp. 790-800, https://pubmed.ncbi.nlm.nih.gov/31854020/.