chronic fatigue syndrome and children
by Claire Laurent
Many of us complain of tiredness as we try to keep pace with work, home, family and a social life. But it is rare for a child to complain of tiredness on a long-term basis.
© Getty
Those who do may simply need more rest to recover from a minor illness. The few whose tiredness persists, particularly if it leads them to miss significant amounts of school, require investigation. Some of these children will turn out to have chronic fatigue syndrome (CFS), also known as myalgic encephalitis or ME.
what is CFS/ME?
Chronic fatigue syndrome affects both children and adults – the most common age of onset is 20-40 years old. In children, it is increasingly the reason given for long-term absence from school. One study in 1997 found that out of a school population of 330,000 children, 51% of all long-term sickness absence was due to CFS/ME. Children as young as five have been diagnosed with CFS/ME although it's more commonly seen in the early teens.
CFS/ME (sometimes called post viral fatigue) makes you feel exhausted most or all of the time over a long period, often to the point of collapse. Symptoms can affect different areas of the body:
- Muscles: pain in the muscles, especially after physical exertion.
- Brain and central nervous system: headache, difficulties with concentration, poor memory, word-finding difficulties. Incidents of dizziness and fainting, sometimes linked to low blood pressure, are common.
- Immune system: recurrent sore throats, joint pains, headaches, high temperature for no apparent reason and intermittent flu-like symptoms.
Jill Moss, founding director of AYME (Association of Young People with ME) says, 'you just feel absolutely and totally exhausted. All your senses are on hyperalert and you can't stand loud noises or bright lights.'
Those with CFS/ME are often suspected of malingering because there is no clear diagnosis for the condition and up until recently it was not officially recognised (see diagnosis, below). However, in 2002, a report by a working group set up by the chief medical officer Liam Donaldson recognised the nature of the condition. At the time Professor Donaldson said: 'The Working Group report confirms that CFS/ME is a debilitating and distressing condition affecting many people.'
However, there continues to be different views amongst the medical profession about CFS/ME. This is mainly because it doesn't have one single cause and people's experience of the condition varies enormously.
what causes CFS/ME?
There is no one cause but there are a number of factors which when combined together are thought to trigger the condition. Dr Trudie Chalder is a psychotherapist who works in the area of chronic fatigue. She says CFS/ME is triggered by a combination of mental and physical factors. For instance, a viral infection occurring at a time of great stress such as exams, moving house or family break up can lead to feelings of exhaustion that don't seem to go away.
For Natalie MacWilliam (see Natalie's story, below) it was a combination of a series of ear infections and colds, coinciding with the pressure of school work and a sudden surge in social activity, that led to her developing CFS/ME.
diagnosis
According to the 2002 report on CFS/ME, early diagnosis is vital to improving a child's chances of recovery. However, there is no test for CFS/ME so diagnosis is a process of elimination. This can be worrying: on the one hand you want to be sure it isn't something sinister but equally you would like an answer. Your GP should take a careful history of the problem and will then arrange for blood tests to exclude any conditions that also cause excessive tiredness such as anaemia, glandular fever or diabetes.
If these tests come back clear and the symptoms are continuing, your GP may diagnose chronic fatigue syndrome or may refer your child to a paediatrician for further investigation and diagnosis.
It's important to realise that anyone with a debilitating illness is bound to be affected emotionally whether as a part of the illness or as a result of it.
If you or your GP is concerned that your child may have depression, then they may be referred to a psychiatrist, a psychologist or a family therapist.
treatment
While there is no cure for CFS/ME, the good news is that children have a better recovery rate from it than do adults. Children tend to require the input of many different specialities: GPs, school nurses, social workers, psychiatrists and psychologists may all contribute to their care. An informed GP can manage all these strands but care may be co-ordinated by a specialist such as a paediatrician.
Jill Moss says, 'The steps towards recovery are infinitesimally small but a child is likely to feel better after six months although they may still be house bound.' The majority of children and adolescents affected with CFS/ME will recover but around 20% may continue to experience some aspects of the condition more than 10 years after its onset.
drug treatment
There is no drug treatment specifically for CFS/ME but drugs are useful in the control of symptoms:
- Painkillers will help control some of the joint and muscle pain as well as headache and abdominal pain.
- Antidepressants may be used to help with depression, but more commonly in children they can be used to improve sleep patterns or reduce pain.
graded exercise
This is a system of introducing activities at a low level and very gradually increasing the time and effort involved.
cognitive behavioural therapy (CBT)
This is a form of therapy used to encourage people to think differently about how they behave or act. There is some evidence of its success in adults with CFS/ME and Dr Chalder has been pioneering its use in the treatment of CFS in children.
She believes that what causes CFS and what maintains the syndrome are often very different. She says that while illness and stress may trigger CFS, too much bed rest can quickly reduce physical fitness as well as confidence in your ability to carry out usual activities. 'If you go to bed you lose 3% of your muscle bulk a day. It may be more in children,' she says.
She has recently completed a pilot study into the use of CBT in children, with promising results. She says: '83% improved in terms of our pre-determined criteria of returning to school and reducing their fatigue levels.' She is now recruiting young people for a randomised control trial into the use of CBT.
In her programme Dr Chalder encourages youngsters to set themselves goals for their activity levels, to be firm about sleeping at night rather than during the day, and she helps them to learn how to think positively about themselves. (For more information, see our feature on cognitive behaviour therapy.)
education
Long-term illness can mean long absences from school. It is essential that a plan is drawn up to ensure your child continues to receive an education, either at home or on a part-time basis at school. Keep in touch with the school and encourage her to have regular contact with school friends. This will prevent her becoming isolated and will help her feel that she will return to school eventually.
Returning to school needs to be managed according to your child's activity levels. Just one lesson a day may be your starting point, but with goals to increase it gradually over weeks and months.
Natalie's story
'It started in September 2000,' says 14-year-old Natalie Macwilliam. I got a series of ear infections. I kept going back to school and getting ill again. After the last infection I got a lot of dizziness and I never seemed to get back to feeling 100%.'
The ear infections and colds continued over the next year leading to six weeks off school just before Christmas 2001. In January Natalie returned to school and her usual routine of playing lots of sport, managing homework and socialising with friends, but it all became too much and by the middle of January she had left school.
Her mother Katherine says, 'She was in bed for six weeks. She gets a lot of dizziness and headaches and her muscles started aching. She gets tired but not to the point where she's falling asleep. Her main problem is that she can't walk very far. She walks around the house and the garden a little way but if we're going out anywhere we take the wheelchair.'
Seeing her in a wheelchair is a shock for Natalie's friends and relatives but in many ways it has made the family's life easier. It means shopping and some outings are a possibility, and they were able to go on holiday this summer, knowing they could manage the airport.'
So far depression has not been a feature of her illness. Natalie has a home tutor to help her keep up with her schoolwork and she maintains close contact with her friends who visit her or talk with her via an Internet chat room or email. Katherine's switched her lunchtime shifts at a local pub to the evening and cut down on other activities during the day so that Natalie is not left for long periods.
'It took about a year for ME to be diagnosed,' says Katherine. 'The doctor kept calling it post viral fatigue but didn't give us any idea of how to deal with it. We just feel if we'd known what it was sooner we would have handled things better, perhaps sent her to school part-time and it wouldn't have got as bad as it has.'
There is no doubt that it can be a long haul but recovery from CFS/ME is possible. Do ask for help from education and health services and find the support that's right for you. Contact one of the organisations below that campaigns for people with ME.
help and info
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organisations
Action for M.E.
Third Floor
Canningford House
38 Victoria Street
Bristol BS1 6BY
Tel: 0845 123 2380 or 0117 9279551
Support service: 0845 123 2314 (Mon-Fri 11am-1pm; Mon 6.30-8.30pm)
E-mail: admin@afme.org.uk
Website: www.afme.org.uk
Provides information, self-help and support services to people with ME, their carers, family and friends.
The ME Association
4 Top Angel
Buckingham Industrial Park
Buckingham MK18 1TH
ME Connect (members): 0870 444 1835 (everyday 10am-12pm, 2-4pm, 7-9pm)
ME Connect (non members) 0870 444 1836 (everyday 10am-12pm, 2-4pm, 7-9pm)
Website: www.meassociation.org.uk
A national charitable association offering support, help and information to those whose lives are affected by ME/CFS.
Association of Young People with ME (AYME)
PO Box 5677
Milton Keynes MK10 1AQ
Helpline: 08451 23 23 89 (Mon-Fri 10am-2pm)
E-mail: info@ayme.org.uk
Website: www.ayme.org.uk
Independent registered charity dedicated to giving help, friendship, support and vital contact to children and young people with ME.
The Young ME Sufferers Trust (Tymes Trust)
PO Box 4347
Stock
Ingatestone CM4 9TE
Advice Line: 01245 401080 (Mon-Fri 11am-1pm and 5pm-7pm)
Website: www.tymestrust.org
UK service for children and young people with ME, and their families. Links directly to Young Action Online, a resource of information from creditable sources for young people with ME and their families .
websites
Chronic Fatigue Syndrome (CFS) – Helping your child to get better
www.rcpsych.ac.uk/.../chronicfatiguesyndromecfs.aspx
Factsheet from the Royal College of Psychiatrists, aimed at parents and teachers.
ME/CFS Parents
www.mecfsparents.org.uk
A community for parents, parents-to-be and people considering parenthood who suffer from ME/CFS. Also contains a useful links page on ME support on the web.
A Report of the CFS/ME Working Group
www.dh.gov.uk/PublicationsAndStatistics/ ..
Proposes ways in which clinicians and the NHS might respond to the urgent challenge of improving health and social care for people affected by the condition.
Overton Studios Trust
www.ostrust.co.uk
UK-based Christian charity providing support and holistic healing for the benefit of sufferers from CFS, ME, post-viral syndrome and fibromyalgia.
reading
'Long-Term Sickness Absence due to ME/CFS in UK Schools: An epidemiological study with medical and educational implications' by E Dowsett and J Colby in Journal of Chronic Fatigue Syndrome, 3, (1997), 29-42. |
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Chronic Fatigue Syndrome by Keith Petrie and Rona Moss-Morris (Routledge, 2000) |
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Self Help for Chronic Fatigue Syndrome: A guide for young people by Trudie Calder and Kaneez Hussain (Blue Stallion, 2002) |
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Zoe's Win by Jane Colby (Dome Vision, 2000) |
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(November 2002, resources updated January 2005)
