Primary and secondary education
M.E./CFS is the biggest cause of health-related long-term school absence. It’s hard to put an accurate number on just how many children and young people have M.E.; prevalence rates vary widely, up to as high as 3%. But even if you only have one student with M.E., you have an essential role to play in offering the right support at the right time – and we can help you do this
Teaching and supporting a child with this complex condition can be challenging. Being led by their needs and agreeing realistic goals will help your student and their family cope with the demands imposed by M.E.
Explaining M.E./CFS has been written by young people, for young people. They asked to work with us on this to help them share the reality of living with M.E. to their peers, friends, family, doctors and schools, to help them to understand their experiences.
It’s important to remember that children may struggle to keep up with school work and their attendance may fluctuate. This can lead to misunderstandings which could escalate to the point where safeguarding proceedings are initiated. This can be avoided by learning about M.E. and its potential impact - we have a range of resources for professionals to support this.
Local authorities must arrange suitable education (or as much education as the child's health condition allows) for children of compulsory school age who, because of illness, would otherwise not receive suitable education. Find out more.
Our Information and Support team welcome calls and emails from any professionals working with people with M.E. of any age. We can share resources and signpost to support for your students.
Resources for schools
- As a teacher there are many ways that you can support your student with M.E. to enable to continue education if their health allows. Our How can I help? page offers information, advice and resources to assist you to do this.
- A number of organisations have collaborated to design Supporting children with medical needs, a flowchart that aims to help schools identify the steps they should take to make sure that children with medical needs receive the right support.
- The Health Conditions in School Alliance has a free downloadable factsheet on school attendance that you, your colleagues and any families with M.E. you are supporting may find helpful.
- We have listed some potentially useful organisations in England, Wales, Scotland and Northern Ireland on our Useful contacts page.
One of the most important things that you can do to support a young person with M.E. is start from a position of belief, with an understanding of what M.E. is and how symptoms might affect them specifically - everyone is different.
Read about Olivia, who became ill when she was just 10 years old and faced considerable misunderstanding about her condition; and Zoe, who got the support she needed thanks to teachers who listened to her and what she needed.
It is important to recognise that M.E. is a fluctuating condition, so a young person may be able to do more on some days than others. It can be frustrating for the young person who may feel physically better one day and over-exert themselves the next, which can have a knock on effect on their later functioning. It is therefore important that as educators that we are mindful that we support the young person in managing their illness in a way that supports all areas of their lives; peers, family as well as educationally.
What to expect
A number of symptoms may have an impact on a child or young person’s with M.E. ability to learn and contribute.
- "post-exertional malaise" is the delayed response to any exertion or activity – often by one or two days. This doesn't just have to be from physical activity, but can also be affected by mental and emotional tasks such as watching TV or feeling stressed
- body temperature might fluctuate without any obvious reason, and young people might get dizzy easily, especially when getting up from sitting or lying down. They might find things are too bright or too loud for them, or they become sensitive to touch.
- The fatigue that comes with M.E. is totally different from "normal" exhaustion. Fatigue levels can go up and down during the day – and sleep may also be affected.
- Young people with M.E. frequently experience pain, including headaches, muscle and joint pain without redness or swelling; or pins and needles. A recurring sore throat is quite common among young people with M.E. as are tummy pains, including nausea.
- Difficulty with concentration and processing information is common, and often referred to by people with M.E. as “brain fog.”
In December 2018, Action for M.E. asked young people with M.E. what they would like their teachers to know about their condition; their comments included:
- “That I can’t always answer questions in class due to brain fog and my homework might not always be done on time. In order for accuracy I need longer so I don’t tire out.”
- “I'm in constant pain; that two hours of school requires two days of bedrest; that studying at home can be completely impossible.”
- “I would want my teacher to understand that I did truly want to learn and be at school and that I would of loved more support from both my class teachers and my guidance counsellor. I found the smallest things a struggle and my concentration and memory are poor because of my M.E.”
Children with M.E. may have special educational needs (SEN) and teachers must take reasonable steps to ensure that they are not placed at a substantial disadvantage compared to others. The Equality Act 2010 defines disability as “a physical or mental impairment that has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities.” This includes M.E.
Some children may only be able to attend school part-time and others may need to be away from school for longer. The child’s GP, paediatrician or specialist will usually need to write to the school and offer guidance on what is a suitable level of attendance them, or if they feel a home tutor would be better at this stage in your pupil’s condition.
Support plans and exam concessions
It is a statutory requirement for children with long-term medical condition such as M.E. to have an Individual Healthcare Plan, drawn up in collaboration with the young person, school, parents/carers and those involved in medical care and treatment.
An Education, Health and Care plan is for children and young people aged up to 25 who need more support than is available through special educational needs support. We have free downloadable factsheets on the following topics that you, your colleagues and any families with M.E. you are supporting may find helpful:
Practical ways to help in lessons
Below are a range of practical ways to help, but these must be discussed in consultation with the student and with their parents/carers. It is recommended that an Individual Healthcare Plan (see above) is drawn up to make sure a range of people input in to how the school may help them. Below is a list of ideas that may help you when including the young person in your teaching:
- First, make sure you read the Individual Healthcare plan to ensure that you are following what has been planned.
- When asking a student a question, allow “take up time,” an additional pause to allow the young person to collect their thoughts and answers. You could also consider giving them time to write out the answer so they can then process information and read it out loud when asked.
- For group work, can another student take responsibility to collect group ideas and write out to reduce physical demands?
- Provide written notes of the class which the student can highlight and annotate, rather than writing out chunks of text.
- If a class is missed, use a scribe partner to provide notes to the missing student.
- Be open to digital and/or telepresence solutions that can be used for the student to be virtually in class even if they can’t physically be there.
- Use a time-out card if the student needs it to take an additional break.
As a teacher there are many ways that you can support your student with M.E. to enable to continue education if their health allows.