September sees back to school, college and university, but for children and young people with ME accessing education can be a massive 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. Add to that a new academic year, with new routines, new places to navigate and new friends and teachers to get to know. There is a tremendous amount of physical and cognitive exertion involved!
So we wanted to write a series of blogs with children and young people in mind. We have learnt a lot through our combined experience in education and living with and working with young people with ME and we’ve got some young people to share their experiences with us for this blog.
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.
Pacing
Pacing is a useful technique to conserve energy and avoid making your symptoms worse;
- Rest before you get tired and don’t push through
- Prioritise sleep and nutrition
- Break up activities (physical and mental) into smaller chunks with rest in between
- Use a diary or an app to aid recall (especially as symptom flare can often be delayed by up to 48 hours)
- Reduce your activities if you are experiencing more symptoms
- Just as you would with activities at home, if you are able to get into school, think about how you can conserve energy and avoid things that increase your post exertional malaise (PEM)
But how can you combine pacing with education when a timetable is involved?! For children and young people with ME there is a lot more to consider.
Educating others
It helps to explain to your teachers and classmates what ME is and how it affects you.
- 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 - You can use the information on our website to help too
Other resources & ideas
- Have a look at 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 - Is there a quiet place you can rest at times throughout the day? If you can lie flat or sit with your feet up this will really help if you experience orthostatic intolerance. There is useful information for school nurses here which highlights the importance of rest - Getting handouts/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?
- There are lots more suggestions for making adjustments from Action for ME here.
Use technology Technology can provide lots of opportunities for young people to join in with lessons.
Some schools now use Microsoft Teams or Skype to allow students to join a lesson on days when they don’t feel well enough to get to the physical classroom. This should be a lot easier now with the COVID19 adaptations.
Some young people have found online school to be a better way of learning within their energy levels. Online schools have a teacher, classroom and whiteboard, just like normal schools but it’s all virtual so you can join your lessons in your pyjamas from home! (more on this in future blogs)
We have also heard of a robot who goes into the classroom and shares information with the child/young person at home.
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. Learning can take place at any age – one of our mums got a GCSE aged 68!
If necessary, take a break from education to allow rest and recovery.
You will see we have shared links to a lot of information from the Tymes Trust. There is a lot more really useful information for children and young people with ME on their website .
We also have a section of our website for parents and we plan to build a section specifically about ME in children and young people.
In the next few blogs we'll be finding out more from young people how they managed to combine ME and education. Register on our website to get an update of when we post them.
If you have suggestions for more topics you'd like us to cover, please get in touch.