Jo Marchant's article in the British Sunday newspaper the Observer is now available online.
Jo Marchant on ME/CFS in Observer
Samantha Miller made a deal with her partner and her sister. She had been referred to a specialist named Peter White at St Bartholomew’s Hospital in London. Please, just give him six months, they said. If you’re still no better after that, we’ll help you to end your life.
White was developing similar ideas about chronic fatigue. He doesn’t call it a central governor, but he too believes that a combination of triggers – genetic, environmental, psychological – overwhelms the body and throws the nervous system out of balance, causing the brain to reduce massively what it considers a safe level of exertion. To try to reverse the change, he developed with colleagues an approach called graded exercise therapy (GET), which is intended to work like an ultra-gentle form of interval training.
The idea is to set a baseline of activity that the patient can maintain safely, then gradually increase it. Each step has to be small, so as not to risk a relapse. Patients report feeling vastly more fatigued than healthy people for a set level of exercise. But White has shown that, after a course of GET, they feel less tired after the same amount of exercise, even though their physical fitness is unchanged. Just as when athletes do repeated sprints, the exercise regime slowly retrains the patients’ brains that each successive activity level is safe.
White also uses cognitive behavioural therapy (CBT), in which therapists work with patients to challenge negative ideas and beliefs that they have about their illness. This is based on the finding that, as long as patients are terrified that any exertion will cause a crash, the fatigue will maintain its grip. CBT encourages them to try out other ways of coping, and to test whether small amounts of activity are all right. The hope is that this will reduce their fear, helping them to realise that perhaps some exertion is safe after all and that they have the chance to recover.
White suggested that Miller try a combination of GET and CBT. “Will I get better?” Miller asked her therapist. “Of course you will,” she replied, and for the first time Miller believed that it might be true.
Her first exercise goal was simply to turn over in bed once an hour. Every few days, she increased her activity slightly until she was able to sit up for five minutes at a time. Later, when she was out of bed, she might try cooking a meal, but the task would be split into parts. Go downstairs. Chop the onions. Go back upstairs and lie down.
As a creative person, she found the total lack of spontaneity hard to accept. But the perfectionism that she feels contributed to her condition helped her.
She kept an activity diary and as the months progressed she was able to do more. “Walk two minutes around the block,” she recalls. “Then walk three minutes. But walking five minutes might put you in bed for three weeks.” She had to stick to the regime, doing no more and no less than the prescribed activity level, no matter how good she was feeling.
If she pushed herself too hard, she would crash. “It takes incredible discipline,” she says. “One slip-up and you are back to square one.” If she broke the rules and tried to do too much, she would start to feel her body go. “I’d feel hot from the feet up, almost like I was being poisoned. Then I’d be ruined for weeks.”
It took five years of grim determination, but she finally clawed her way out of the fatigue and back into a normal life.
Several small clinical trials suggested that Miller wasn’t alone.
The results showed that CBT and GET were helpful treatments. But instead of welcoming the findings, patient groups hated them. “That was received like a lead balloon by almost all the patient charities in the UK and abroad,” says White. These groups were very sceptical that a “psychological” treatment like CBT might help patients with CFS and believed that the activity goals of graded exercise therapy were downright dangerous. CFS is a purely physical condition with no known cure, they argued, so anyone helped by either of White’s therapies clearly didn’t have it.
Instead, patient groups advocated an approach called pacing. This helps patients adapt to life within the physical limits set by the condition and encourages them not to do anything that pushes them close to exhaustion. This would make perfect sense if chronic fatigue were incurable. But, according to White’s theories, it could be counter-productive, by reinforcing negative beliefs and acting to maintain the condition rather than allowing patients to recover.
It is fascinating.
