By Professor Roddy Cowie
The conditions called ME and CFS are not rare. Data from a respected source suggest that they currently affect 160,000 people in the UK. For them, every week is ME awareness week. For most of them, that will go on for years more. From personal experience, it will be a rare week when they do not have to deal with someone saying, or implying, that it is ‘all in the mind’. Very few of the people who say it will know anything about the condition, or about the relationship between mind and body.
It takes incredibly sophisticated systems to make human thought and action possible. At least two layers are involved. One is the layer whose workings we experience as thought – call it rational awareness. The other layer comes to the fore in moments that we call emotional, but it is always at work: weighing up the balance of threat and opportunity around us; bringing to mind the things that rational awareness might need to know; managing the groundwork of our relationships to other people; setting our bodies up to work at high pitch, or to relax and enjoy a meal, or to sleep; shaping the way we learn; and if need be, spotting danger and ringing alarm bells.
The second layer sits across the mind-body divide that people often take as read (though it is thoroughly at odds with most genuinely scientific thinking). Its work involves reaching, so to speak, up into conscious awareness, and down into guts and glands, heartrates and hormones.
People who are diagnosed with ME show multiple signs that something is wrong with that layer. Most obviously, it does not settle back into balance as it should. Where a well-adjusted system would set people in a low-energy state for a while, they may be kept there for months or years; the surge that normally prepares people to wake may go on surging, and drive them to a long-lasting state of shock; muscle fibres tense, and stay tense, until they are viciously painful; the sense of threat, or powerlessness to deal with threat, may build up, and refuse to go; and so on.
Nobody knows the full list, or why these things happen. What does seem clear is that some of the best levers we have involve the relationship between rational awareness and emotion. Whatever causes the imbalances, some ways of thinking about emotional issues can help to reset them.
It may be that when we understand the second layer better, we will find more direct ways to deal with the problems. For now, though, it is crucial that we help people to use the levers that we have, and do not condemn them to long drawn out suffering because what they are going through does not fit a pattern that we can easily make sense of – and even more, that we do not make it worse by convincing ourselves that because we do not understand it, they must be making it up.