This account has been adapted from an article which appears in the Summer 2009 issue of InterAction, Action for M.E.’s membership magazine.
Joe is 11 and he would like to be an author when he grows up. He likes reading books and writing stories. Football is another favourite. He’s a Tottenham supporter. But messing about with his friends is best.
It is four years since Joe first became ill. Not seeing his friends was one of the worst aspects.
“My mum says it was like a virus that got worse and worse,” he says. “And then it was M.E.
“I would get extremely tired from little effort and I had symptoms like stomach ache, pains in my legs, headache. I didn’t feel good at all.”
At least he had an understanding GP who referred him to a community paediatrician.
“I belong to an M.E. clinic,” Joe goes on. “Dr Vickers has helped me a lot. Stella Parry helps me with school. She’s my occupational therapist. She goes to the school and talks to the teachers and gives me regular check ups.
“Also my mum and dad have been really good.”
(He has banished his mum to the kitchen for the interview).
“Now I’m better – but still not exactly perfect. I can’t go to every match or do half an hour’s training but I can play football.
“If I’m really tired I have a nap, get my strength back. I think I have to relax to get better.”
He can go to school for longer than he used to.
“I go nearly every day for two or three hours. I quite like maths. English is okay. I have a timetable and when important things come up like trips or tests I know in advance and I can rest up. I manage to go to most of them and I enjoy them… well, not the tests!”
We chat some more and then Joe’s mum, Teresa, comes on the line. She also has M.E. She remembers when he first became poorly.
“He got a cough and he just couldn’t get rid of it. We had planned to go to London at Easter. The virus seemed to have gone but Joe wasn’t himself, always very tired. Some days he was so ill, in so much pain, he could barely move.
“Luckily we had a very good doctor. He realised very quickly that something was going on and did tests to exclude other illnesses. Then he referred us on to Dr Vickers who identified M.E. straight away.
“He said we should recognise it was M.E. and call it that.
“He was setting up a clinic and he introduced us to Stella. She’s the one who has held our hand.”
Stella was on hand last year, by which time Joe was in his third year of M.E.,
“Three year’s is a benchmark,” says Teresa. “Joe was quite down as he had been expecting to feel better. Stella came around and reminded us how poorly he had been and how far he’d come. He was not completely better – but he was much better.
It has been really helpful for Joe and Teresa to have Stella’s support at school, too.
“When Joe was ill at first, he had awful headaches and couldn’t do much,” his mum explains. “A trip to the bathroom was enough for him for the day. He couldn’t go upstairs. He was really very poorly for a year and a half.
“He was going to school for a bit every week but he was missing great swathes of school too. His teacher now, Mrs Cox is wonderful but overall it was obvious that people didn’t understand M.E. It’s not a visible illness. It’s something people do find very difficult to get their heads round.
“That’s one of the hardest things to deal with. You’re almost having to justify the illness. Very frustrating.
“The ignorant people are the ones missing out”
“I just have the mindset now that there are always going to be some people who are ignorant about the illness or not open to understanding, however long I bang on about it. At the end of the day, they are the ones missing out on a fantastic relationship with Joe. I am not going to worry about them. The people who matter, understand.”
In an interview on the Great Ormond Street Hospital website, Teresa describes circumstances which will be familiar to many readers:
“One of the problems we have with Joe is that when he is having a good day and feeling a little better he won't stop, which is why he crashes.
“(People) see Joe running around like all the other kids but what they don't realise is that it's going to hit him in the aftermath. We – and Joe in particular – still face people who believe there is nothing wrong with him and that he's just being lazy.”
Which is ridiculous when you know the child and how much he or she enjoys being active.
As celebrity chef, Sophie Michell, said of being ill with M.E. when she was young (InterAction 62, p 24): “Where’s the fun in lying in bed, not seeing your friends, catching every cold that’s going?”
Children as young as two were found to have M.E. in a study at Bath paediatric M.E./CFS service, undertaken by Susanna Davies and Dr Esther Crawley (InterAction 63, p 14). Out of 216 children assessed by the service between April 2005 and April 2007, 178 children under 18 were diagnosed as having M.E./CFS. Of these, 32 (16%) were aged under 12, four were under five and the youngest was just two years old.
Teresa told Great Ormond Street Hospital:
“I have M.E. but I had no idea that children as young as seven could get it; it came as a real shock.”
And not just for her but for her son too:
“Joe's life has changed considerably – he went from being a really active boy who loved all sorts of activities, like swimming and karate, to being able to do hardly anything. It was a real shock for him but I'm amazed at how resilient he is.
“His health has slowly improved and we manage Joe's condition through pacing, which means he does a little activity and then rests. If we plan a day out, Joe needs to rest a few days before and after.”
Do things when you can
Teresa tells me: “It’s important with M.E. that you do things when you can but if you can’t do them, it’s okay.”
Local football team, Soham United, have made a huge difference to Joe.
“Such a small thing really,” says his mum. “They are brilliant at letting Joe turn up when he can. He can’t train or play for long and yet Soham United have made him feel a huge part of the team. Not everyone would let someone do that who can’t play every week. Teams can do this for kids and it makes them feel good. Joe’s confidence has improved too.”
Not allowing themselves to feel down is important to this family.
“Joe is such a happy kid,” Teresa says on the website. “He really gets on with things. The only time it can be upsetting is when you think about how much fun your son is missing out on.
“We take one day at a time and we feel confident that he's going to get better – we just can't predict when that will be. Sometimes, during a good spell, we get really excited but it can be really disappointing when he goes downhill again.
“My advice to other parents in this situation would be to never give up hope that your child is going to get better. We take our motivation from Joe; he's so optimistic and cheerful.”
What about Joe? What would he say to other children if they got M.E.?
“Don’t panic,” is his recommendation. “It’s not the end of the world. Relax and enjoy what you can.”
*Extracts reproduced with kind permission from Children First for Health - Great Ormond Street Hospital's leading health information website for young people of all ages and parents: http://www.childrenfirst.nhs.uk