Case study: Emma West, 18
By the time I saw him, my list of symptoms included tiredness, dizziness, muscular pains, poor eyesight, blisters on my gums and swollen glands. When I woke up in the morning it was too painful to walk, so I had to crawl around for the first hour.
The paediatrician thought my mild eczema was causing all the problems, but my doctor couldn't believe it. I was referred to various specialists, and this pattern of referrals, blood tests and puzzled doctors went on for about a year. I felt depressed because I didn't know what was wrong with me, and I was finding it hard to go to school, which upset me because I loved lessons.
When a different paediatrician finally diagnosed ME, it was the first time I'd ever heard of the condition. I was given a leaflet for children explaining about the illness, and was struck by how many different things people with ME suffered from.
The next day I took the leaflet to school, and everyone was really supportive. Unfortunately, almost as soon as I was diagnosed, I left my junior school to join the local comprehensive.
Going to a new school is always daunting, but for me it was even more so because I had to explain what was wrong with me to all my new teachers and classmates. I wanted everyone to know about my ME to avoid awkward questions about absences, so I decided to do a short speech in assembly telling everyone about the condition. Most students and staff were friendly and supportive after that, and my boyfriend says he remembers thinking how brave I must be.
I did think about going part-time, but instead I made an arrangement with the school that I could come in whenever I felt well enough. At first I only went for two or three days, but in my final year of A-levels, I went in almost every day. Despite all the support, I still found school a challenge. I'm a terrible perfectionist, like a lot of people I know who have ME. I remember sometimes crying if I wasn't well enough to go in.
My symptoms go in cycles. At the moment, I've been suffering from leg pain.
I was never given any guidance on how to get better, because there was no treatment. Pacing is generally thought to be the best way to manage ME, and although I never specifically "paced" myself, it came naturally.
The strange thing is that I've always been able to do most things; it's just that two to three days afterwards, I get ill. This can make people sceptical about the condition. I remember once seeing a doctor other than my normal GP. She started asking me whether I liked school. I felt so upset and frustrated because I loved school more than anything.
I would say that the best way you can teach children with ME is to always communicate with them, and ultimately trust that they know how much they can do. Things such as suspended homework deadlines and copies of lesson notes really make a difference.
This summer I managed to get three As at A-level. The fact that I gained a place at Cardiff University to study English literature next year is partly down to the support of some fantastic teachers.
I'm now taking a gap year, and am using the time to write a novel, which I'm so excited about. I've also joined the editorial board of InterAction, the magazine of the charity Action for ME, as young people's editor.
Emma West, 18, attended Clevedon community school near Bristol