For young people with ME, accessing education can be a major challenge.
We shouldn’t underestimate how much energy is used in getting up, getting dressed, getting to school, listening to lessons with all the information shared by teachers, walking round school sites, talking to other students and travelling home.
Adapting in School
Pacing is an essential tool for managing activity levels.
There are lots of suggestions for adaptations here
Consider using the Tymes Trust pass card. We know of one young person who has a “lift pass” as an example, which means they don’t need to climb three flights of stairs to get to one classroom
Find a quiet place you can rest at times throughout the day. Give some information to school nurses to outline the importance of rest
Getting handouts or class notes before lessons means you might not need to take as many notes during the lessons. Alternatively can you record the lessons or have a scribe to take notes?
The Tymes Trust have produced a questionnaire that you can use to start conversations with teachers, lecturers and support staff about what you can and can’t do, and what they can do to help
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 exams can be found here
An education health and care plan (EHCP) might be useful if you need extra help and support
Some young people have found online school to be a better way of learning within their energy levels and without exacerbating their symptoms.
Online schools 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!
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.