The information on this page is designed to help you support and advocate for your child with 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 child’s school and your doctor so that everyone can work together to help your child get the most out of school.
What is ME/CFS?
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]
A note on long COVID
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?
One of the key aspects of ME/CFS is a substantial reduction in function. This means the person with ME/CFS will not be able to do all of the things they did before they became unwell. It is likely that your child or young person will need adjustments at school to help them manage.
For some, only minor adjustments may be needed, such as rest breaks. For others, more significant adjustments may be needed, like limited school hours. There will be some for whom school may not be possible at all, but for them, remaining in contact with friends and the school system is important.
How much your child or young person can do will vary both within a day, and over time. All plans should be flexible and the child or young person must be believed when they say they are unable to do something. For example, they may have managed to get to school, but then feel a crash coming on and now need to come home. Pushing through is not advised.
Post-exertional malaise (PEM)
The central feature of ME/CFS, and a common symptom of long COVID, is PEM. This is when symptoms get worse after physical or mental activity that was not a problem before your child or young person became unwell.
Some things to remember about PEM include that:
- PEM is not fatigue – it involves an increase in current symptoms or the addition of new symptoms. For example, your child or young person may feel like they have the flu, feel sick, have a headache, or experience muscle weakness
- PEM can be delayed, which means the impact of an activity, or number of activities, may not be seen at school, but at home, or not until the weekend
- Recovery from PEM can take a long time (a good sleep is not usually enough). It can take days, weeks or even longer to recover from PEM
- A student’s capacity will be better on days they are not experiencing PEM, and extremely limited on days that they are.
You can check out our short video about PEM on our PEM webpage.
Management of PEM
Think of your child or young person’s energy like a battery. It is never fully charged, and the charge runs out faster than normal. Managing PEM involves pacing activity to stay within their ‘energy limits’, to avoid running their battery flat.
The key management strategy for PEM is called pacing, which involves keeping activity within energy limits and frequent rest.
Research suggests that children and young people with ME/CFS are more likely to recover than those who develop the condition later in life. Pacing activity and not pushing past limits is crucial to increase the likelihood that your child or young person will recover.
Sometimes, even with pacing, students will be unable to manage a normal school day and should not be expected to.
Our Support and Telehealth Service can help you and your child establish a pacing plan.
Book a Telehealth Consultation
Other common symptoms of ME/CFS
As well as PEM, other symptoms can include [3]:
- Extreme fatigue – this is more than just being tired and may look like reduced stamina. It is not due to a lack of fitness or motivation
- Cognitive problems – problems with thinking, focus and memory
- Unrefreshing or disturbed sleep – waking up tired, trouble going to sleep, waking up frequently during the night, or needing to sleep during the day
- Sensitivity to light, smell, sound, temperature, foods or chemicals. You might not be affected by these, but your child or young person may find them very difficult
- General or local pain that can change
- Feeling light-headed or dizzy when sitting or standing (this is called orthostatic intolerance).
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.
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.
Education adjustments for ME/CFS or long COVID
The aim of all adjustments is to support your child or young person’s pathway through school, and their ability to keep in touch with friends while living within their energy limits.
You can book an appointment with our Support and Telehealth Service, if you would like some help understanding your child or young person’s symptom and function profile.
Book a Telehealth Consultation
The ideas below are suggestions only. It is important to work with your doctor, child or young person, and the school, to decide on the adjustments that are best for the student as an individual with their own symptoms, goals, preferences and energy limits.
Suggestions for engaging with your school include:
- Developing an Individual Learning Plan (ILP) with your child or young person, doctor and school, with your child or young person at the centre of the decision–making process. Take into account their particular circumstances, the changing nature of ME/CFS or long COVID energy limits, symptoms, and their personal preferences
- Asking for a single point of contact at school, so you can speak to the same person each time. You could develop a summary card that your child or young person can show to new or relief teachers, or as a reminder for everyone
- The student should never be pressured to participate in sports or to push their limits. ME/CFS is not being ‘unfit’, and pushing past their limits can cause severe relapses or a ‘crash’ lasting days, weeks, months or years. Pacing activity and not pushing past limits is crucial to increase the likelihood that your child will recover
- Some children and young people with ME/CFS or long COVID will be too severely affected to continue with school (even from home), no matter how much they are supported. However, remaining connected in some way can keep options open and will make it easier to engage with school later on, if their health improves.
- Choosing subjects that strongly interest the student can encourage success, and maintain school engagement and enjoyment, if reducing the number of subjects is required.
Supporting student wellbeing
Social contact is often limited, due to the need for rest and restricted school activities, and a tendency to prioritise school and homework. Balance is important. When possible, opportunities to spend time with friends should be made.
This may include:
- Inclusion in school or lunchtime social activities, even if the student is unable to attend all classes
- With the student’s permission, ask the school to help friends and fellow students understand the changes that are being made. For example, brainstorm with the class ways the student can feel more included in and out of the classroom.
Specific adjustments
We have provided a table of potential adjustments, next to the symptoms that are common in ME/CFS and long COVID. We encourage you to explore the suggestions with your child or young person and their doctor, and take it to your school to help with completing an ILP. There may be other adjustments that may be medically necessary, or that are identified by you, your child or young person, their doctor or the school.
When experiencing PEM, further adjustments may be necessary. It is important to be flexible and keep lines of communication open.
‘If weather is hot or humid, the school is happy for my daughter to stay inside with some friends during breaks’ – Michelle
Table 1. Specific adjustments
Symptom | Adjustment |
PEM: loss of physical and mental stamina, symptoms made worse by physical or cognitive exertion or Orthostatic intolerance: dizziness or weakness when standing or Fatigue: persistent, marked fatigue that substantially reduces activity level |
|
A long recovery period from exertion: takes more than 24 hours to recover to pre-exertion activity level |
|
Sleep disturbance: non-restorative sleep, insomnia, hypersomnia |
|
Pain: muscles, joints headaches |
|
Memory disturbance: poor short-term memory |
|
Confusion and difficulty concentrating |
|
Difficulty retrieving words or saying the wrong word |
|
Gastrointestinal disturbance: diarrhoea, IBS |
|
Heat or cold intolerance, or erratic changes in body temperature |
|
Sensitive to light, noise or odours |
|
Other adjustments not listed |
|
Other medical supports not listed |
|
Functional physical hours/mins |
|
Functional cognitive hours/mins |
|
Can sit in a chair for hours/mins before the need to walk or lie down |
|
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.
References
[1]Centers for Disease Control and Prevention, myalgic encephalomyelitis/chronic fatigue syndrome, https://www.cdc.gov/me-cfs/index.html.
[2]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.
[3]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/.
