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Expert Answers: Can my daughter learn to live with ME?
My daughter is 14 and has been diagnosed with ME. But trying to get her to take things easy is difficult. She thinks we are holding her back. But she needs to take things slowly otherwise she relapses. We just want her to get better.
ME is a chronic illness affecting around a quarter of a million people in the UK.
It is also known as chronic fatigue syndrome (CFS) and sometimes, depending on the circumstances, it is diagnosed as post-viral fatigue syndrome (PVFS).
The illness fluctuates in its severity and can affect many parts of the body, such as the nervous and immune systems. The symptom most commonly associated with the condition is severe fatigue or exhaustion.
Other side-effects include problems with memory and concentration and muscle pain.
Back in the '80s, ME was referred to disparagingly as yuppie flu, but it is now recognised the condition can affect both sexes from all social and ethnic groups.
Most people develop the illness between their early-20s and mid-40s, but the condition can affect people younger and older than this – even those as young as five.
As there is no medical test available to confirm a diagnosis, most people see their doctor several times before ME is confirmed.
Generally the diagnosis involves taking a careful medical history and ruling out other possibilities.
The sooner appropriate advice and treatment are started, the better, but it generally takes at least six months before a diagnosis is reached and, in many cases, it can take much longer.
The charity Action For ME is at the forefront of campaigning for the rights of people with the condition.
Founded in 1987 by people with ME, following reaction to an article in a national paper about the condition, it grew out of a determination to bring about change.
The organisation is still run by people with direct experience of the condition.
It combines campaigning and information with training, and it is now the largest ME charity in the UK.
Action For ME supports people with the condition through local support groups and other services, including counselling.
There are around 150 ME support groups across the UK giving mutual support and understanding.
Anyone can access the comprehensive website (afme.org.uk), full of valuable information both for the person with the condition and those caring for them.
There's a further website aimed specifically at young people (a4me.org.uk) that covers all age ranges.
The charity runs two telephone helplines; one for support and the other for welfare rights.
The support line is available between 11am and 1pm Monday to Friday on 0845 123 2314, however, to access the welfare rights helpline you need to be a member of Action for ME (which costs 15 per annum).
In addition to the welfare rights helpline, members get access to a range of other information, including a quarterly magazine.
Once an ME diagnosis is made, it is vital to the recovery process that people come to terms with the diagnosis and learn to gain control of the illness.
Action for ME can help those who think they may be affected as well as those diagnosed with the condition.Paul Charlson
GP from Brough
ME is difficult to diagnose as there are no tests for it. The commonest age of onset is around your daughter's age. Pacing lifestyle is a key element of treatment and that is what you are doing. Clearly taking it easy and not going out much is hardly attractive to teenagers but that is what your daughter needs to do. I think your daughter might benefit from some cognitive behavioural therapy which your GP may be able to arrange. This might help your daughter learn to cope with her illness and understand what she needs to do to get better. Unfortunately, ME can last for months, sometimes years, so her "buying into" the principles of treatment are crucial for long-term success. Make sure that you and your daughter have ongoing professional support as treatment my need to be adjusted over time.
Elaine Douglas
A chartered psychologist who specialises in family and child relationships
Your daughter has only recently been diagnosed and so all of you are having to come to terms with her condition. It is only natural that you should be protective but from her point of view she feels restricted. At the moment, I suspect that she is focusing on what she can't do, rather than what she can do to help herself. It might be worth looking into complementary therapies that may help her to feel better. Some sufferers find gentle exercise such as yoga or t'ai chi can help. On the going out front, perhaps you can discuss this with her and come to some sort of compromise. The key concept here is she needs to pace herself. For example, if she is used to going into town on a Saturday afternoon with her friends could she do this for an hour rather than the whole afternoon? You could drop her off and collect her. It is difficult for young people to take a long-term view with something like this. If you can build in some treats that are not too far into the future, it could help her adjust.
Cary Cooper
Professor of Organisational Psychology and Health at Lancaster University
I had ME many years ago and I know that I tried to continue working through it but found it very difficult. It took a long time before I recovered but I continued working but at a reduced rate. It is difficult to get this across to young people, who feel isolated and out of the loop with their friends. I think it is about maintaining her friendship groups, so one solution is to allow your daughter to invite them to stay on a Friday or Saturday night, a night in but with treats (ie, a film, a special meal, etc).The peer group is everything to teenagers, so somehow she needs to feel part of the group and anything you can think of doing to ensure this happens would help. Rest is important with this condition, and somehow you need to let her friends know that so that they can organise some of their activities with this in mind.
Dr Carol Burniston
Consultant Clinical Child Psychologist
In my experience, ME is self-limiting and your daughter will be a good judge of what she can and cannot manage. Letting your daughter make some of her own decisions in the management of her illness will enable her to think about the outcomes of different choices. You could talk in advance of her decision making about what you feel are the priorities, for example, ensuring she is able to access as much of her education as possible and that it should come first before partying. Most young people are very sensible and will probably agree with this. Advice in cases of ME used to be to rest as much as possible. We now know that this leads to muscle wastage and can compound the physical effects of the illness. A gradual return to normal activity is now the advice. Encourage your daughter to keep a diary so that she can have an objective view on the progress she makes and the effects on her energy levels. This will give you both a less emotional way of talking about her progress.
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