I’m a pragmatist, not a theorist. You need a good theory to test, but after that, just show me the data.
So when it comes to writing about hard-to-treat conditions like chronic fatigue syndrome, I’m mainly interested in what works, not the arguments about what causes it. I know a lot of people are very interested though, so let me start by affirming that it’s a real illness that causes real disability. It sounds dreadful and I have enormous sympathy for anyone who is unlucky enough to suffer from it.
So, what works? NICE guidelines (while admitting that the evidence is unsatisfactory) recommend cognitive behaviour therapy and graded exercise therapy. CBT helps people face their fears, challenges unhelpful beliefs and helps people take control of their situation. GET encourages people to do a little more activity every day, reconditioning muscles and increasing exercise capacity. Both are founded on the belief that people can recover from chronic fatigue, and doing more will help them recover.
But these therapies have been controversial. Some people think that, if you propose CBT, it means you think the illness is ‘all in the head’. It doesn’t. CBT helps with many pain-related and chronic conditions, by helping people manage their illness and feel more in control of their lives. And GET has been blamed for making people worse, by pushing them to do more than their bodies can manage.
The alternative, according to some patient advocacy groups, is ‘pacing’, which means adapting your activities so that you only do a certain amount each day, avoiding pushing yourself to fatigue. As pacing has not been properly studied before, it was unclear whether it helped.
The answer to that question is getting a little clearer, with a new study published last week in The Lancet. The study assigned everyone to ‘specialist care’ where they got advice and support. Three quarters of the group were then randomly assigned to either CBT, GET or pacing on top of specialist care.
The results were clear. Cognitive behaviour therapy and graded exercise therapy improve fatigue and help people to return to a more active lifestyle. Pacing, on the other hand, doesn’t help. Importantly, people having CBT or GET were no more likely to have adverse effects from their treatment, to drop out because of adverse effects, or to say their condition had got worse, than people using pacing.
Kudos to the researchers for taking seriously people’s concerns about treatment for CFS, and designing a trial that gave good, clear results that makes treatment just that bit easier to recommend. For more on the study, see my Best Health story or read the abstract.
