Does your child have ME?

Young People with ME

I started in teaching in 1971 (Maths and Physics), but unfortunately had to retire in 2001 after going down with ME. My son went down with it 10 years before I did, when he was at junior school. So I have experienced the conflict between ME and education from both sides. It's bad enough having ME, but to watch your own child suffer with it, and missing so much of their lives, is so very, very hard.

First of all, it is important to realise that when we first go down with ME, our bodies pour everything they have into fighting this illness. It doesn't leave much. The number one priority is to ensure that your son or daughter has enough rest, a good diet, and time for the immune system to do its work. This is a really serious long-term illness: do not underestimate it.

All sorts of "experts" will make all sorts of claims, but the truth is that we know very, very little about recovery rates, and even less about what produces these cures, but it does seem true that young people have a better chance of recovery than adults: the first three years seem to be very important here, so this is why it is so important not to give way to any encouragement to "push through". You know your own child better than any "expert" so trust your own judgement when you see them struggling.

The second priority is to do what you can to ensure that you son or daughter still has some social contact, within their limitations. Depending on their level of illness, this may start off with emails or traditional penfriends. Best friends who stick around are invaluable. They can visit when you feel it is possible. The reason that youngsters with ME become isolated is not because they don't wish to have friends, but because the effort needed to interact with other people often makes them worse. Do not be made to feel guilty when your son or daughter manages to have "treats" in terms of visits from friends or going out from time to time.

A useful link here is the Tymes Trust simple two page leaflet, to give to each friend to show them how to help. You can download it and print it double-sided as a three-fold leaflet.

Education is much further down the list. These days it is relatively easy to catch up. Believe me, as a teacher I can assure you that schools are pretty inefficient places, and students can make rapid strides catching up when they are fit and healthy. Sadly there are still many in education who still believe that youngsters should push themselves through it to keep up with the work. They are utterly wrong. Look at what is expected and do not worry about saying no. Only a few teachers will have had any experience or understanding of the illness, and the good teachers will appreciate your input. You would be surprised at what is possible, and what the education authorities are required to provide for your son or daughter. My son, for example, was able to take his GCSEs at home under teacher supervision. You can get practical advice on learning methods that are suitable for youngsters with ME from the Tymes Trust Advice Line Team: 0845 003 9002.

The strongest piece of advice I can give you is to join Tymes Trust (The Young ME Sufferers Trust) run by Jane Colby. She has ME herself, was a headteacher, and has worked tirelessly to support parents and to ensure that the education authorities support parents properly as the regulations insist. She is brilliant and has an excellent team around her! You can also look at their Facebook page, which is public, so you do not need to be a member of Facebook. Sadly, you will almost certainly need such support, so join now, find out the facts, find out what is available, and find out what the best advice is.