‘Managing chronic fatigue is all about pace — do not go for boom or bust’ | Dr Mark Porter in ‘The Times’ | 26 January 2016

January 27, 2016


From The Times, 26 January 2016.

New research suggesting that chronic fatigue syndrome is more common in teenagers than previously thought is bound to move the condition up the NHS agenda — and not before time. CFS isn’t always taken as seriously as it should be, resulting in mismanagement that can perpetuate the problem.

This latest study by a team from the University of Bristol suggests that about one in thirty 16-year-olds struggle with the condition for at least three months, and one in fifty for six months or more. The resulting mental and physical exhaustion is having a significant impact on their education with the average participant (there were more than 5,700) missing at least half a day of schooling a week. And it exacts an even bigger toll on adults.

CFS, or myalgic encephalomyelitis (ME) as some prefer to call it, remains poorly underst ood but typically follows some form of illness or injury such as an infection like glandular fever, or a blow to the head sustained in an accident. Signs and symptoms vary but the classic picture is of persistent and recurrent fatigue that is exacerbated by physical or mental exertion.

Those affected may also have disturbed sleep, non-specific muscle and joint pain, headaches, sore throat and swollen glands. Mental “fogging” is another common complaint with loss of short-term memory and an inability to process complex thoughts and information. 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 specific test for CFS. The diagnosis is normally arrived at once other conditions, such as an underactive thyroid, diabetes or anaemia, have been excluded. This is all too often where medical care comes to an end and the patient is left to fend for themselves.

Time is a great healer and the outlook for most people is good — as many as nine out of ten children and half of all adults will make a full recovery — but incorrect management can prolong the illness. And it is easy to get it wrong because some of the strategies are counterintuitive. This is what I tell my patients.

It is now generally accepted — among doctors at least — that it is vital to avoid the boom-bust cycle where people do a lot on days when they feel good and take to their beds on days when they feel awful. The trick is to pace yourself across the week. Split the difference between what you can do on a good day and on a bad day, and do that every day.

Remember that activity is both physical and mental exertion, so include things like working on the computer, homework, housework, commuting, etc. Once you have got the hang of pacing yourself, you can try gradually increasing your activity level week by week. If your symptoms worsen then you are overdoing it and you need to cut back.

Regular rest and sleep are important too. 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 don’t count as proper rest).

And while it may be tempting to take to your bed if you feel tired, too much sleep can worsen fatigue. The longer you spend in bed the less recuperative your sleep is likely to be. Adults should limit their sleep to no more than seven to eight hours a 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 to get up in the morning even when you feel like a lie-in.

Last, never ignore the psychological repercussions of CFS — feeling awful for months on end will dampen the spirits of the hardiest person and is likely to accentuate their symptoms. Psychotherapy (cognitive behavioural therapy) can work wonders for some people, but will be of no benefit to others.

• About 250,000 people in the UK are thought to have CFS/ME
• Milder forms are not that serious but when severe it can leave victims housebound and often bedridden (the worst cases require hospital treatment)
• The National Institute for Health and Care Excellence recently updated its guidance on CFS/ME — visit nice.org.uk for more details.

2 thoughts on “‘Managing chronic fatigue is all about pace — do not go for boom or bust’ | Dr Mark Porter in ‘The Times’ | 26 January 2016”

  1. ”Time is a great healer and the outlook for most people is good — as many as nine out of ten children and half of all adults will make a full recovery — but incorrect management can prolong the illness.”

    I heard Esther Crawley say something similar on Woman’s Hour the other day. What empirical evidence they quoting? Please don’t tell me it’s the Pace Trial.

  2. I wasn’t familiar with Dr Mark Porter so googled him and saw – on MEA site – that he had written an almost identical article in 2008, he seems to have reissued it and tagged it on to the Bristol findings (many of us have little faith in a study that uses parental questionnaires and such a broad definition of ME, certainly seems to be conflated with chronic fatigue.)

    I can see that Dr Porter is well-meaning but he seems to exaggerate rates of recovery, though I do know that prognosis in children is better than for adults with ME.

    Still, I feel he does not fully understand the actual disease process going on in severe ME. Of course, pacing is crucial to how we manage our illness but it does not magically get rid of mitochondrial dysfunction. I do not recognise boom or bust, I live with constant PEM, it fluctuates in severity but I never feel okay. I can never boom!

    Also, I think his language is a little problematic, we do not ‘take to our beds’, we are often bedbound because we feel as if we are dying, not simply ‘washed out’. And it is not just a case of ‘chill out’ for five minutes to rest and repair.

    I do not want to detract from a doctor who is clearly trying to support young people with CFS, but I think until we have clearly defined subsets, the criteria of what is fatigue, what is CFS and what is ME is always going to cause problems in portrayal of how severe this illness can be.

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