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ME & Education

Our last few blogs have been focussed on young people with ME and accessing education. You might think this is a topic that isn’t covered by physiotherapy but in our experience accessing education is one of the biggest challenges for young people with ME, and physiotherapists can help by advising about energy management and pacing.

This quote from a person with ME sums up why we think different options for education are worth considering for young people with ME:

The pure logistics of getting to school, the getting up and dressed and to the school and then moving between classes can suck away energy, leaving little for academic learning or even for the important work of learning to be a social human. It can be counter-productive, as sitting in school feeling dreadful and then getting home to crash into bed doesn't achieve anything positive.”

We’re rounding up this series of blogs with further thoughts on accessing education. Please note this is general advice which we hope will provide you with some suggestions; all treatment for people with ME should be individualised, constantly monitored and evaluated.

Online Schools

Some young people have found online school to be a better way of learning within their energy levels and without exacerbating their symptoms. This is where technology can really help.

Thanks to COVID19, most schools now have online options so it is worth asking if you could join from home that way. We've heard of a college who is running their lessons face to face in the classroom but also with Teams set up for students who are self- isolating, so it can be done! Just ask!

Online schools tend to work differently – they are a totally separate school with a teacher and an interactive online classroom. They usually have a chat box and a way for you to speak to the teacher without the rest of the class knowing. They can teach a range of subjects at all levels from primary through to A level and often the lessons are recorded so even if you have to miss a lesson because you don’t feel well you can listen in later. Nobody sees you so you can stay in your bed for lessons if that is easier. Homework is usually also done on the online platform and marked by the teacher.

Some examples we have heard of are Interhigh, Academy 21 and Nisai. We are unable to recommend any providers, but when choosing an online school here are some things to think about:

- What times are the subjects you want to study?

- How long are the lessons?

- Are the lessons recorded?

- How much homework is there?

- How do they provide feedback on progress?

Unfortunately going to an online school means you won’t see your classmates during lessons, so you need to think about how to build in ways to keep in touch with your friends. Socialising is as important as lessons and probably brings more joy!

Optimise your learning environment

If you are studying from home, it’s important to think about where and how you sit, especially if you are doing a lot of learning on a computer or laptop.

- Try and get a supportive chair and adjust it so your feet are flat on the floor.

- Adjust the height of your chair and computer screen so your eyes are about level with the top of your screen and your forearms are roughly horizontal when using your mouse and keyboard.

- Place your mouse within easy reach and support your forearm lightly on the desk. Move the mouse from your shoulder, not your wrist

- Some young people with ME find that they need to consider light and temperature when choosing where to sit. One young person we worked with experienced a lot of headaches when studying in a room with bright sunshine coming in through the windows and often had to stop mid lesson. We tried moving their desk to a room on the opposite side of the house with less sunshine – no more headaches and they were then able to complete all their lessons.

Exam concessions

Exam concessions (known as access arrangements) allow learners with special educational needs, disabilities or temporary injuries to access the assessment without changing the demands of the assessment (more information about access arrangements here

For more ME specific advice, there is a good leaflet on the Tymes Trust website here

Help from Local Authorities

Your local authority has a responsibility to arrange education for children who are unable to attend school because of their health. Here’s a link to the guidance An education health and care plan (EHCP) might be useful if you need extra help and support – there is lots of advice here

And finally…

Remember it is also important to take time out to spend with friends, relaxing and doing things you enjoy. Try not to spend all your energy on education and if necessary, take a break from education to allow rest and recovery.

There is a lot more really useful information for children and young people with ME from Tymes Trust whose website can be found here

We will be updating our website with a lot of this information – if you have any experiences or tips that you think will help other young people with ME, please do get in touch to share them.

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