by Jo Marchant
She recovered from the operation and the gastroenteritis, yet she was left unable even to get out of bed. She was exhausted but not sleeping, in constant pain, and over-sensitive to sound and light. She couldn’t get downstairs, so her partner left fruit by the bed when he went to work. She felt overwhelmed and vulnerable—she couldn’t sit up, listen to the radio, or answer the door (she remembers reflecting that if instead she was in a wheelchair, having lost the use of her legs completely, she’d at least have had the energy to get to the door).
Whenever she did try to push herself, her symptoms got even worse. So she lay there for months, memorizing every crack in the room and staring at a big picture on the wall—an Oxfordshire landscape that she had painted herself. “I’d think, I can’t believe I made that. How can I ever make anything again?”
Although her partner was supportive, she felt that her friends and family didn’t understand. They said things like “I’m exhausted all the time too,” and she knew they thought she was somehow choosing to be ill. A particularly painful moment was when her father said, “This is boring now, I think you should get better.” With no life, and no hope of recovery, Samantha called on her partner and her twin sister. She asked them to help her to kill herself.
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CHRONIC FATIGUE SYNDROME (CFS) is one of the most controversial conditions in medicine. Researchers, physicians and patients struggle to agree on its name, its definition, or even whether it exists. But the prognosis is bad. An analysis of trials that followed patients for up to five years concluded that the recovery rate is just 5%.21
The condition came to doctors’ attention in the twentieth century after a series of mystery epidemics in which large numbers of people were struck by unexplained weakness and fatigue. Two particularly striking outbreaks occurred at the Royal Free Hospital in London in the 1950s, and at Lake Tahoe, Nevada, in the 1980s, where the illness was nicknamed “Raggedy Ann syndrome.” Then doctors started to see individual cases cropping up in the wider population too.
Chronic fatigue syndrome is also known as myalgic encephalopathy, or ME (although not everyone agrees that these are the same condition). There is no proven cause and no agreed-upon diagnostic tests,22 but the condition is defined as six months or more of persistent fatigue that disrupts life and doesn’t get better with rest. It is accompanied by other symptoms including impaired memory or concentration, sore throat, tender lymph nodes, headaches, and joint and muscle pain. In severe cases, like Samantha’s, patients are confined to bed for long periods of time.
The symptoms are very similar to those of the flu, and in many cases, CFS does seem to be triggered by viral infections such as glandular fever (although not the flu itself). The body seems to clear the viral infection, but the fatigue stays. Of adults who get glandular fever, about 12% develop CFS six months later.23
Because there is no clear biological mechanism, the condition has often been claimed to have a psychological cause: psychiatrists in the 1970s put it down to “mass hysteria,” while in the 1980s the press cruelly nicknamed it “yuppie flu,” with the implication that sufferers were spoiled young people who were too lazy to work. Medical authorities now agree that it is a genuine discrete condition, even though its causes are still debated, but many sufferers still feel that they are dismissed as hypochondriacs who need to pull themselves together.
Noakes got interested in CFS after seeing athletes affected by the illness, and realized that it did not fit this stereotype. “I saw too many professional athletes who wanted to run, they were losing everything, and they still couldn’t run,” he says. “The last thing they wanted to do was to be sick.”
He believes the answer to the condition lies in the brain. “The central governor has got its settings wrong. It’s over-estimating how fatigued you are.” Most of the research into the idea of a central governor involves subtle shifts at the very limits of performance, often in elite athletes. But what happens if that entire system crashes? The fatigue that normally protects us from pushing ourselves too far might instead become a prison.
Whatever the trigger—virus, overwork, a genetic predisposition, or (most likely) a combination of several factors—Noakes argues that in CFS the boundaries of physical activity narrow tremendously, to the point where patients are essentially immobilized. If he’s right, it would mean that sufferers like Samantha couldn’t “decide” to be more active any more than Messner could have done a jig on top of Everest, or Farah could have shaved 20 seconds off his medal-winning time in London.
But it does hint that their condition might be influenced by psychological factors. Indeed, one of the most robust scientific findings regarding CFS is that when patients are convinced that their condition is biological and untreatable, and fear that engaging in activity will be harmful, they are much less likely to recover. “If they believe it’s incurable, it’s incurable,” says Noakes. Although signals from the body are clearly crucial in determining when we tire, ultimately it’s the brain that’s in control.
This also raises the question of whether cognitive and behavioral therapies could be used to slowly push back the brain’s draconian limits. If interval training works for athletes by teaching the central governor that ever-greater levels of exertion are safe, might it also work for patients with CFS?
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SAMANTHA 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.
Independent of Noakes, White was developing similar ideas about CFS. 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. CFS 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 behavioral 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 viselike grip. CBT encourages them to try out other ideas and 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 realize that perhaps some exertion is safe after all and that they have the chance to recover.
White suggested that Samantha try a combination of GET and CBT. “Will I get better?” Samantha asked her therapist. “Of course you will,” she replied, and for the first time Samantha 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 it 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 now 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.
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SEVERAL SMALL clinical trials suggested that Samantha wasn’t alone.24 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 U.K. and abroad,” says White.25 These groups were very skeptical 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 CFS were in fact 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.
Who was right? White and his colleagues decided to do a definitive trial. They worked with the biggest U.K. patient charity, Action for ME, to design and run the five-year study. It included 641 patients, divided into four groups. A control group just got routine medical care—advice on avoiding extremes of activity, plus drugs for symptoms such as depression, insomnia and pain as needed. The other groups got this standard care plus either CBT, GET or pacing, developed into a therapy (adaptive pacing therapy, or APT).
The researchers published their results in The Lancet medical journal in 2011. They found that APT was completely ineffective; patients in this group did no better than the controls.26 But GET and CBT were both moderately helpful, reducing fatigue and disability scores significantly more than in the other two groups. What’s more, 22% of patients recovered after a year in the CBT and GET groups, compared to just 7–8% in the other two groups. That’s still not a great success record, but it showed that White’s approach was the best treatment available, and demonstrated that recovery from the condition is possible.
If the previous trials had gone down badly, this one was received with absolute fury. The Lancet was deluged by letters criticizing White’s methods. Action for ME rejected the findings. One professor called the trial “unethical and unscientific” in a 43-page74omplaint to the journal, while patients used Facebook to ask “When is the Lancet going to retract this fraudulent study?”
Instead, the journal published an editorial in support of White and his colleagues, saying that they “should be praised for their willingness to test competing ideas and interventions in a randomized trial.”27 But it didn’t change the attitude of the patient groups. After working for years to fund, organize and run a definitive trial, White finally had the data that he believed could help other CFS patients like Samantha. Patients attending his clinics welcomed the findings, but he could not persuade ME patient organizations to listen.
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THE DEBATE over whether CFS is a biological or a psychological disease still runs hot. In June 2014, two academics from the Essex CFS/ME service at Southend University Hospital, U.K., posted an article on the website of the British Medical Journal, speculating that CFS might be a “meme.”28 This term was invented by geneticist Richard Dawkins in his 1976 book, The Selfish Gene, to describe a psychological idea or behavior that is transmitted from person to person.
The authors of the article argued that several medical conditions through history might be due to memes, such as “railway brain,” a combination of fatigue and psychiatric symptoms that affected travelers on trains in the mid-nineteenth century (a new innovation for the time) and was thought to be due to invisible brain damage caused by the jolty ride. Perhaps, they said, some aspects of CFS are spread in a meme-like fashion too.
There was an immediate campaign to have the article retracted. The ME Association wrote of its members’ shock, anger and concern at the suggestions. In online comments beneath the article, CFS patients accused the authors of “ignorance, bigotry, and outright cruelty,” while their ideas were denounced as “appalling,” “sick and warped” and “batshit crazy.”29 A few days later, the Essex CFS/ME service wrote to the ME Association distancing itself from the article and saying that the authors were “very sorry for any distress they may have caused.”
According to White, the problem, as ever, comes from a mindset that pervades medicine, in which illnesses are seen as either biological or psychological. “The vast majority of doctors have this dualistic understanding of mind and body,” he says. “Go and see a psychiatrist for the mind and a physician for the body.” It’s a distinction that leaves CFS patients with only two options—their condition is either biological, currently incurable and completely impermeable to psychological factors. Or they’re hypochondriacs who have invented the whole thing. No wonder they are on the defensive.
In fact, argues White, it’s a false divide. The mind and body inevitably interact and reflect each other: “What is psychological is physical and what is physical has a psychological perception to it.” Scientists are increasingly finding that psychiatric disorders such as schizophrenia or depression reflect structural abnormalities in the brain, while neurological problems such as Parkinson’s cause psychological symptoms as well as physical ones.
White points out that although CBT is often thought of as a psychological therapy, it has physical effects on the body. Several studies have shown that a course of CBT triggers a measurable increase in brain matter, for example, or that it can influence the levels of stress hormones such as cortisol.
A wider shift in attitudes might help CFS patients to accept that physical and psychological factors are entwined in their illness, he argues, without fear of being stigmatized. CFS isn’t either biological or psychological. It’s both.
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IT IS now two years since Samantha recovered from CFS. “I do more than a lot of women my age,” she says, dipping a strip of pita bread into her hummus. “I cycled here. I manage to coordinate my accessories!” She still has to be careful—a challenging bike ride, or getting too stressed at work, can trigger her symptoms. “You have to step back mentally and physically,” she says.
So now she takes sick days when she’s ill, and says “no” to things. She works part-time as an art therapist, doing pottery with prison inmates and psychiatric patients with conditions such as bipolar disorder and schizophrenia. Working with clay provides a safe space for them to talk, she says. “If the conversation gets difficult, you can go right back to the clay.”
She also works as an artist.30 In one series of pieces, old mementoes—dolls, pinecones, animal skulls—are neatly arranged in ornate frames. She says she likes the idea of rescuing once-precious personal treasures that have become redundant, and giving them a new life and meaning. She paints too, haunting mindscapes including an industrial black and blood-red labyrinth of hospital beds and arched windows, entwined with the first lines of Thomas Hardy’s poem The Darkling Thrush: “I leant upon a coppice gate when frost was specter-gray. And winter’s dregs made desolate the weakening eye of day.”
That poem ends, of course, with the joyous song of a frail thrush; from the dark death of winter, a symbol of “blessed hope.”
I’m standing in a small hospital room in the north of England. Lying on the bed is a young mother, clutching her ab
domen. She’s panting and moaning, and she looks terrified.
Emma is 21, with a young son at home. She has blond hair and a silver charm around her neck. In a chair next to the bed is Emma’s own mother. As she strokes her daughter’s arm, she fixes the doctor with huge, blue, desperate eyes. She looks as though she hasn’t slept in weeks.
Emma is holding a purple hot-water bottle against her side; the skin on her arm is red raw from the heat but she refuses to let it go. She groans, moving into different positions in an attempt to ease the pain. She tries sitting on the edge of the bed, then leans over forwards, breathing heavily, with her hand covering her face.
“Owwwww,” she moans, then looks over to apologize. “Gosh, sorry, it’s getting really unbelievable now. It builds.” With the pain, contractions and anxiety, Emma looks just like a woman in labor. Except that there is no baby. And she feels like this every day.
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WE’RE IN the Wythenshawe Hospital in Manchester, U.K., and this is just another morning in the clinic of consultant Peter Whorwell. After Emma, he sees Fraser, a man in his late forties who has been diagnosed with congestive myopathy, a heart condition that killed his father in his forties and could now cause Fraser’s heart to fail suddenly too.
But that’s not why he’s here. He can cope with the heart defect, he says—if the worst happens an implanted defibrillator should revive him. What’s making him depressed and desperate is permanent, uncontrollable diarrhea. Fraser shows Whorwell a photograph of a soiled pair of jeans. He wore them to a party, then had to stand with his back against the wall until everyone had gone home.
Then there’s 38-year-old Gina, who is visiting the clinic for the first time. “Tell me about it,” says Whorwell, and Gina talks for maybe half an hour. She started suffering from abdominal pain when she was 18, after giving birth to her daughter. At first, it wasn’t clear whether the problem was gastrointestinal or gynecological. She was given a hysterectomy at 27, and since then several rounds of bowel surgery, but her symptoms have deteriorated each time. Now she’s severely constipated. She’s taking ten different drugs, including laxatives and powerful painkillers, but nothing solves the problem. Unless she intervenes with lidocaine gel and an anal irrigation system, she doesn’t poo for weeks.