From Sainsbury's magazine, March 2008
Is it just ME?
Chronic fatigue syndrome is very real but often misunderstood, says Dr Mark Porter
I may regret this. Every time I write about chronic fatigue syndrome, also known as ME, I am swamped with vehement missives from a small but vocal minority. Some from colleagues who question the very existence of the condition while the rest come from disenfranchised patients who are convinced I am part of some NHS conspiracy to prevent them getting the treatment they deserve. But for the majority of people who lie between these polar extremes, here are some basic facts I think everyone should know about the condition.
It is both real and common. At least a quarter of a million people are thought to be affected in the UK at any one time, many of whom, are children. Doctors prefer to call it chronic fatigue syndrome (CFS, while patients prefer myalgic encephalomyelitis (ME); the terms are interchangeable. CFS/ME typically follows some form of insult, particularly viral infections such as glandular fever, although other triggers include meningitis and heads injury.
Signs and symptoms vary but typically include persistent and recurrent fatigue that is classically worse following physical or mental exertion. Those affected may also have disturbed sleep, non-specific muscle and joint pain, headaches, a sore throat and swollen glands. Mental fogging is another problem, with loss of short-term memory and difficulty processing complex information being common complaints. Like the fatigue, these symptoms are often worse 24 hours after a day of activity, and can be triggered by setbacks such as coughs and colds, late nights and stress. There is no one diagnostic test for CFS/ME and the diagnosis is normally given once other conditions such as an underactive thyroid, diabetes or anaemia have been excluded.
The outlook for most people with CFS/ME is good – as many as nine out of 10 children and half of all adults make a full recovery. Incorrect management strategies, however, will prolong the illness. It is vital to avoid the bust-boom cycle where people do a lot on days when they feel good, and take to their beds on days when they feel awful. It is only natural to overdo it when you are feeling better, but payback later in the week is inevitable so the trick is to pace yourself across the week. Split the difference between what you can do on a good day and a bad day, and do that every day. And remember that ‘activity’ required both physical and mental exertion, so includes things such as working on the computer, homework, housework, commuting and so on Once you have got the hang of pacing yourself, you can gradually try increasing your activity level each week. If your symptoms worsen then you need to cut back.
The other crucial management strategies are rest and sleep. Try to have five minutes’ rest every hour throughout the day. Don’t doze, just lie down and chill out (reading or watching your favourite TV programme doesn’t count as proper rest). And while it may be tempting to take to your bed if you feel tired, too much sleep can, paradoxically, worsen fatigue. The longer you spend in bed the less recuperative your sleep is likely to be. Adults should limit their sleep to between seven and eight hours a night, every night, and children should be limited to what is normal for their peers (up to nine or ten hours for younger children). This may mean staying up even when you feel washed out, and setting your alarm in the morning even when you feel like a lie-in.
Lastly, consider the psychological repercussions of CFS/ME. Feeling awful for months on end can dampen the spirits of the hardiest person and is likely to accentuate their symptoms. While psychotherapy (cognitive behaviour therapy) can work wonders for some people, it will be of no benefit to others.
The facts about ME
- About 250,000 people in the UK are thought to have chronic fatigue syndrome/ME at any one time, at least 40,000 of whom are children.
- Milder forms are that not that serious (a teenager taking longer than expected to recover from glandular fever, for example), but when severe it can leave victims housebound and often bedridden – the worst cases requiring hospitalisation.
- There is no good clinical evidence that supplements such as vitamins, magnesium or coenzyme Q10 help. But some patients swear by them and they are unlikely to do any harm if taken in sensible doses.
- The National Institute for Health and Clinical Excellence (NICE) recently issued guidelines on best practice for managing CFS/ME. For details, visit www.nice.org.uk