We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). And yet it causes misery and suffering for hundreds of thousands of people, including many children.
One in a hundredÌýteenagers in the UKÌý because of it, and 2 per cent are probably missing out on the normal stuff that teenagers do. Those I see in my clinic are sick with disabling fatigue, memory and concentration problems, and terrible pain. On average, they miss a year of school, on top of which mothers give up work and .
Yet progress on this illness is being hampered by controversy, with some people disputing both its cause and treatment. Some still dismiss it as a non-illness; others decry attempts to treat it with psychological therapy.
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The result is that few patients are offered treatment and there is almost no research on the condition. This illness is more common than leukaemia and more disabling than childhood arthritis, but few specialists treat it.
How have we arrived at a position where the biggest reason for teenagers to miss school long-term is rarely studied and society allows so few to receive treatment?
Part of the difficulty is that CFS/ME is not a single illness. Both children and adults that may represent different illnesses with different biology, . This may explain why treatments only work for some – and is a problem for those trying to develop them and for people who don’t get better.
Beyond tired
At the same time, fatigue is something that everybody experiences. Although epidemiology clearly shows that CFS/ME is different to normal fatigue, people still argue that because they have been tired, itÌýis not a real illness. The truth is that when those without CFS feel tired, it will be for a short period, without other symptoms, and won’t stop you working, studying or socialising.
My patients would love to go to school or see their friends, but have had to give up these things.
Although CFS is poorly studied, we do know it is heritable and is triggered by something, usually an infection, to which .
In teenagers, we know hormones are affected: for example, the . We also know that there are changes indicating that metabolism is different from normal. We now know that in leading to CFS, but the severity of the initial illness caused by the bug.
More research needed
We need more research to understand what happens to keep people so sick, long after the initial illness has passed.
Some people say that because we haven’t worked out the biology, the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological.
Even more strange is the argument that because clinicians currently use behavioural approaches to treat it, we must secretly think it is psychological.
Changing someone’s behaviour is a potent stimulus to changing their biology. For example, altering how well a teenager sleeps will change their biology, including daily cortisol patterns.
So what does the field need? We need very large studies that look at the underlying biology, including genetics, to understand the different subtypes of CFS. In the UK, the National Health Service is probably the place to do them.
While we await the results, we need better treatments for the large number of people with the condition who want to get back to school or work. We are currently recruiting patients for the largest study so far to investigate internet-delivered cognitive behavioural therapy for children and teenagers throughout the UK.
Patients are desperate for this trial, yet some people are still trying to stop us. The fighting needs to end. Those of us who want to help people with CFS must work together so that this important illness is not ignored any longer.
Ester CrawleyÌýis leading the UK trial of
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