Action for M.E.

Accessing education

To begin with, if you are well enough to still manage some work at home, your parents/ carers should ask for work from your teacher. They will probably then have to go into school to collect the work. The teachers might ask your parents/ carers to help with explaining the work to you and to work with you rather like your teacher might have done, rather than just sending worksheets home.

You and your parents/ carers must be flexible as this will create extra work for the teacher.

When you have done the work, return it to school so your teacher can give you feedback. Keep in touch with the teacher so they know how you are getting on. Some days you might be able to do a little bit of work, other days you might not be able to do any. Just take it slowly.

If you are off school for a long time, your parents/ carers should arrange to meet your teacher. They should book a meeting through the school office and give plenty of warning of what the meeting is about so your teacher can prepare properly.

Also your parents/ carers should contact your Local Education Authority (LEA) to find out about what procedures are in place for home tuition. They could also contact your local Parent Partnership Scheme (find their contact details in yellow pages) who will offer more information and support. If you are in hospital at any time you may be able to do some schoolwork through the hospital school or hospital teaching service.

Having home tuition can help you to feel more a part of things. Keeping up with some schoolwork might mean that you can rejoin your friends in the same year, once you're well enough to return to school.

It's really important that you explain your CFS/ M.E. to your home teacher, so that they can make sure you're not doing too much, as this could slow down your recovery or even make you worse. For example:

How your illness changes throughout the day or from day to day. So you will have to explain why you feel worse/ better than the day before
How some days you feel bright and others you feel terrible
How the work you are doing needs to be in short sessions and that it should vary i.e. a bit of reading, writing, drawing, thinking, speaking - not all the same activity for a whole session
How you might need to eat or drink during the teaching session
How you might need to rest between sessions, so you don't use up your energy in one big blast of activity. PACE IT!
Any change in your symptoms over time

The time when you do your schoolwork could be roughly the same each day, so if you feel brighter in the afternoons this would be a better time to work. Do not increase the amount of work that you do, until you have been doing the same amount for several weeks - this way you know you will not make yourself more ill. When you do decide to do more work, just do a little bit more at a time.

As M.E. can carry on for many months or years, your school may decide to give you more support by issuing an Individual Education Plan, as encouraged by the Special Education Needs Code of Practice.

Information produced February 2004