Manchester Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) Service for Children and Young People

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1 Royal Manchester Children s Hospital Manchester Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) Service for Children and Young People Information for Young People and their Families

2 This leaflet explains about Chronic Fatigue Syndrome/Myalgic encephelomyelitis (CFS/ME) and how the team at the Royal Manchester Children s Hospital can help. If you have any questions, please call us. Our contact details are shown on page 6. Chronic Fatigue Syndrome (CFS) can also be called Myalgic Encephalomyelitis (ME). The Chief Medical Officer recommends it be referred to as CFS/ME. No one currently knows why it happens or what causes CFS/ME but your doctors will have checked that there is no other known explanation for your symptoms. People diagnosed with CFS/ME have some common complaints and symptoms for example: Fatigue Sleep problems Nausea Dizziness Headache Forgetfulness Poor concentration Joint pain Muscle aches/cramps Irritable bowel syndrome Mood changes This list is not exhaustive, and not everybody will experience all of these symptoms. We have compiled some frequently asked questions, which will give you an insight into what we do and how we can help you and your family. 2

3 What is the CFS/ME Service? We are a multi-disciplinary team who offer advice, support and individual treatment programmes for children and young people diagnosed with CFS/ME. We also have a crucial role in co-ordinating the many services involved in caring for you and your family. Who is the service for? Children and young people up to their 16th birthday, with CFS/ME can be referred to the service by a Consultant Paediatrician or Child and Adolescent Mental Health Service (CAMHS) professional. We will also see some young people up to the age of 18. Is this service right for me? For those aged between 16 and 18 years, it may be useful to speak with the team to consider the most appropriate service for you. There are advantages and disadvantages to being seen within an adult service or a children s service and we will be able to support you in making a decision as to which is the right service for you. What happens if I am referred? You will be contacted by the CFS/ME Nurse who will arrange your first appointment. This will usually be within our clinic at the Royal Manchester Children s Hospital and you will meet our Paediatrician at this point too. You will have plenty of opportunity to ask questions. Some people find it helpful to write a list of questions before each appointment to remind them. 3

4 An individual rehabilitation plan will then be developed with you and your family so that it specifically targets your individual needs. We will discuss together how to help you manage your energy in a way that works for you. In particular we look at the balance between your activity, rest and sleep. We will be able to give you written information about how we do this. You may come across other members of the team throughout. What does rehabilitation involve? Routine: Avoiding boom and bust Young people with CFS/ME say they have good days and bad days. On a good day, they are often very busy (boom), but on the following days, their symptoms seem worse than normal (bust). Having a routine where you do the same things every day helps get rid of these boom and bust feelings. Sleep Not getting enough sleep can affect how much activity you can do. This part of the rehabilitation programme tries to help you improve the quality of sleep. This means you are more able to take part in activities. Activity and exercise Everyone finds it difficult to get back to normal activities when they have been ill for a while. This may be because your muscles have become weak and you may have become unfit. Some people are frightened of making their symptoms worse by doing particular activities. The Nurse/Physiotherapist/Occupational Therapist will help you put together a plan of how to improve what you can do each day. 4

5 Returning to school School is a normal part of everyday life. The CFS/ME team will work with you, your family and your local school and health teams to plan your return to school. Sometimes people find that having lessons at home is necessary until they feel a bit better. Medication Whilst there is no medication to cure CFS/ME, sometimes medication may be prescribed to help with the symptoms such as poor sleep. Support If you have CFS/ME it can be helpful to discuss your feelings with the team. Being ill can have an effect on the whole family, so it may help your parents, brothers and sisters to talk about their feelings too. Who is in the team? The team has a broad range of experience and expertise in managing CFS/ME including Nursing, Physiotherapy, Occupational Therapy, Psychology, Paediatrics and Psychiatry. Each person plays a different part in helping you to get better and more able to manage your symptoms. 5

6 We have a secretary too who will always pass on your messages to us if we are not available when you ring. Where are we based and contact details? We are based at the Royal Manchester Children s Hospital. If you would like to know more about our service or have any questions you would like answered then please contact us at the following address: Alex Woore Co-ordinating Clinician Manchester CFS/ME Service for Children and Young People Harrington Building Royal Manchester Children s Hospital Hathersage Road Manchester M13 9WL Tel: Monday to Friday 9.00 am to 5.00 pm. An answer machine will operate at all other times. Alternatively you can the team directly at: cfs.me@cmft.nhs.uk Who else can help? There is a support organisation for young people with CFS/ME: Association for Young People with ME (AYME). Telephone: (Monday to Friday from am to 2.00 pm) Web: 6

7 Further reading Young person s guide to CFS/ME Royal College of Paediatricians and Child Health (RCPCH) They have also produced a guideline for managing children and young people with CFS/ME. It was written after looking at all the published research on CFS/ME. 7

8 No Smoking Policy The NHS has a responsibility for the nation s health. Protect yourself, patients, visitors and staff by adhering to our no smoking policy. Smoking is not permitted within any of our hospital buildings or grounds. The Manchester Stop Smoking Service can be contacted on Tel: (0161) ( Translation and Interpretation Service Do you have difficulty speaking or understanding English? /6342 Manchester CFS/ME Service for Children and Young People Royal Manchester Children s Hospital Oxford Road Manchester M13 9WL Tel: Copyright to Central Manchester University Hospitals NHS Foundation Trust TIG 151/10 Produced October 2010 Review Date October 2012 (SF Taylor CM11004)