M.E. and/or 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 Action for M.E. is here to help.
Teaching and supporting a child with this complex condition can be challenging. However, the outlook for young people with M.E. is good and many will improve. Accepting the limitations of M.E. and agreeing realistic targets will help your pupil and their family cope with the demands imposed by M.E.
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.
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Please get in touch for information and support: we are here to help. We have also listed some potentially useful organisations in England, Wales, Scotland and Northern Ireland on our Useful contacts page.
Isolation is a huge issue for young people with M.E. We offer a peer-support community they can join for free, with services including pen-pals and a secure online forum.
One of the most important things that you can do to support young people with M.E. is start from a position of belief, with an understanding of what M.E. is and how it may affect each individual young person.
It is important to recognise that the nature of M.E. is that is a fluctuating condition, some days a young person may be able to do more than the next. 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.
A number of symptoms may have an impact on a child or young person’s with M.E. ability to learn and contribute.
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:
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. It may also be that children with M.E. are considered disabled as described under the Equality Act 2010.
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.
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 a free downloadable factsheets on the following topics that you, your colleagues and any families with M.E. you are supporting may find helpful:
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:
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. If you are a teacher and want to know more about the condition and how you can help your students our 'How can I help?' page offers information, advice and resources to assist you to do this.
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