Young people: What is ME?
What is ME? – an introduction for children
ME is an illness which can make you very unwell and weak and in some young people it can last for a long time. It belongs to the family of illnesses called ‘neurological’. People of all ages can get it.
What is it called?
It is an illness of many names but is often called ME, CFS, ME/CFS or CFS/ME for short. We prefer to call it ME.
ME – Myalgic Encephalomyelitis [the original name]
or Myalgic Encephalopathy [some people think this is more accurate]
CFS – Chronic Fatigue Syndrome [your doctor may prefer this name]
PVFS – Post Viral Fatigue Syndrome [You may be told this is what you have if your recovery from Glandular Fever or other virus is slow.]
What causes it?
Scientists have uncovered some clues but they are still looking for the full answer. There are a number of theories and not everybody agrees that ME exists or that it is a real illness.
You might have become ill after having a virus like flu, an injection or a stomach bug. There can be other triggers, or you may not know why your illness started.
How do I find out if I have ME?
There are no tests that doctors can do to prove it, so first they have to check that something else isn’t causing you to feel ill. Your doctor will ask about your symptoms, when they started and how bad they are. You might be asked to keep a diary of your symptoms and activities. They will also examine you and test your blood and urine. Your tests might be normal but if your symptoms fit a pattern you might be told you have CFS or ME. If your GP suspects you may have CFS then you should be referred to a paediatrician (a doctor who specialises in illness in children).
How will ME affect me?
There are many different ways it can affect you and everybody is not the same. You might feel weak and exhausted as if you have a bug that won’t go away. You may not feel well enough to do the things you normally enjoy like reading, listening to music, watching TV or visiting your friends. You may feel sore all over for no reason, have a headache, can’t think straight or have a sore stomach.
You may also feel as tired when you wake up as when you went to bed the night before. You may find it is difficult to get to sleep or that you can’t sleep at night but will sleep all day.
The thing that makes ME different from other illnesses is that normal activities make you feel worse for a while, although you may not notice this until the following day or later.
Some days can be better than others. In fact you may think you are better or getting better and then you have a very bad day and feel awful again for a while. For most people bad days don’t last. Unfortunately some young people do not have good days and may not be able to go to school for a time or can only attend part-time.
How long does it last?
Longer than you would like! You might start to improve after a few months but for others it might take quite a bit longer. A few young people never recover completely. The good news is that young people are more likely to recover than adults but everyone is different and nobody will be able to tell you how long it will take for you to get better. It is important to be patient and accept that it might be a long journey.
Is there a cure?
Unfortunately there is no cure and what helps one person may not help another. What seems to help most in the early days is to take enough rest and not to push yourself too hard.
Doctors can prescribe medicine to help pain or sleep problems and may ask other health professionals to help you with other problems.
- Be patient, getting better could take time
- Try not to worry about falling behind with your schoolwork as you can always catch up when you are feeling more able to cope.
- Take plenty of rests and try to do something often that you can manage, and that you enjoy – focus on what you can do and not on what you can’t.
- Don’t bottle up how you feel; it might help to talk to someone who knows what you are going through!