What is ME/CFS?
Myalgic Encephalopathy/Chronic Fatigue Syndrome is a recognised condition that includes a wide range of symptoms. Some people call it ME and others call it Chronic Fatigue Syndrome.
The main feature is overwhelming tiredness that is different to normal tiredness.
You may also notice some joint or muscle pain, headaches, sleep problems, feeling sick or have stomach ache.
As with any condition, symptoms will vary from person to person and from day to day.
Why did I get it?
Anybody can get ME/CFS and there are a variety of reasons why it might have started. Although no one can say for certain, we know that things like viral infections or stress can trigger the condition.
Will I get better?
Lots of young people improve and many get better from ME/CFS. Some young people will get better in a few months, for others it might take a bit longer.
How can I get better?
There are many things that can help. You and your therapist will work together to create an individual plan to suit you. This may be about managing energy and activity levels, getting back to school (if necessary) and other activities as well as dealing with your emotions.
How do I get help from you?
You will need to have a diagnosis of ME/CFS, this is usually made by a paediatrician who is a specialist doctor for children and young people. The paediatrician or your GP can refer you to our service.
When you have been referred, a member of the team will contact you and your parents and we will arrange to meet with you.
Where will I be seen?
We will usually meet with you in a community hospital or if necessary at your home.
Who will I meet with?
You will meet with one or two of the specialist ME/CFS therapists. Sometimes we have people training or studying to become professionals who may join you, but only with your permission.
What will actually happen?
Mostly talking. By the end of the first appointment we hope to have had the chance to discuss together what will happen next. Sometimes, we may need to meet with you again to find out more information. We may decide together that another service will be able to support you better, or we will offer you some further 1:1 sessions.
We will ask your permission to get or give information to someone else, such as your school or other people who may be involved in supporting you, if this is useful for your care.
We can work together with your school to help plan for your educational needs to be met in the most appropriate way.
Will I get a chance to talk on my own?
We try to give young people, as well as parents and carers, space to talk on their own with the therapist. However, you can choose to talk all together if this is what you would prefer.
Useful info and links
Young Person’s Guide to ME/CFS
A useful leaflet by the Royal College of Psychiatrists. Download it here Young Persons Guide to ME CFS
This is a national organisation that provides information, support and advice to people to help improve their health and well-being, Action for ME, works with professionals to enhance the care and support that people with ME receive and funds pilot research projects to advance knowledge of the illness.
It has a special service for young people. It’s Children’s Services community is a great way for you to talk to other people your age who have ME. Some are more severely affected than others, but even if their experiences are different to yours, every member of our community understands what it’s like to live with ME.
“Overcoming Chronic Fatigue in Young People” by Katharine Rimes and Trudie Chalder
An effective evidence-based, step-by-step guide to managing and overcoming chronic fatigue. It’s aimed at young people, with downloadable material to support recovery. It also includes a guide for parents and a helpful resources section. Available to order from bookshops and from online retailers in download format. Publisher: Taylor & Francis Ltd ISBN: 9781138802896
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Page last reviewed: 6 December, 2021