‘ It was like being buried alive ‘: combat to recover from chronic fatigue syndrome

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Is it physical or mental or a combination of the two? Does chronic fatigue syndrome, or ME, even exist? In an excerpt from her book Remedy, Jo Marchant tells the story of Samantha Miller, one sufferer of the controversial condition

It was like being interred alive, Samantha Miller says matter-of-factly, fixing me with blue eyes as she munches on falafel. I was exhausted, with terrible joint aches. It was like having flu all the time with no certainty of recovery. I couldnt do anything. I was trapped.

Today, she looks vibrant and younger than her 46 years. She is immaculately dressed in 1950 s-inspired floral pinks with a fluffy beret and bright lipstick; her blonde hair is twisted prettily and fixed with a white carnation. Weve fulfilled for lunch in a Turkish restaurant in north London and, as we talk, she seems energetic, fun and very sharp. Its hard to believe she has spent several years fighting her style back from hell.

In the late 1990 s, Miller was living in Hampstead , north London, and teaching art at a short-staffed, under-funded secondary school. She found dealing with children tiring. Children still have the invincibility of youth, she says. They havent been crushed by anything yet. She was also a keen mountain biker and swimmer and resulted a hectic social life. If something required doing, she would pick up the slack. And she was always striving to be perfect.

Then she got ill. I had a glandular, viral thing, she says. It didnt occur to her to take time off run. So I was going in with a raging temperature. That was the phase at which something changed. Although she recovered from the illness, afterwards she felt sleepy all the time. A few years later she underwent a back operating and while she was in the hospital she contracted gastroenteritis. It was horrific, she says. I was being physically assaulted from all sides.

She recovered from the operation and the gastroenteritis, yet she was left unable even to get out of bed. She was depleted but not sleeping, in constant ache and over-sensitive to audio and lighting. She couldnt get downstairs, so her partner left fruit by the bed when he went to work. She felt overwhelmed and vulnerable she couldnt sit up, listen to the radio or answer the door( she recollects reflecting that if instead she had been in a wheelchair, having lost the use of her legs altogether, shed at the least have had the energy to get to the door ).

Whenever she did try to push herself, her symptoms get worse. So she lay there for months, memorising every fissure on the walls in the room and staring at a big picture on the wall an Oxfordshire landscape that she had painted herself. Id think, I cant believe I induced that. How can I ever make anything again?

Although her partner was supportive, she felt that her friends and family didnt understand. They said things like Im exhausted all the time too and she knew they guessed she was somehow choosing to be ill. A especially painful moment was when her parent said: This is boring now, I think you should get better. With no life, and no hope of recovery, Miller called on her partner and her twin sister. She asked them to help her to kill herself.

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Medical authorities agree it is a genuine condition, but many sufferers still feel they are dismissed as hypochondriacs. Photograph: Dominic McKenzie for the Observer

Chronic fatigue syndrome is one of the most controversial conditions. Researchers, doctors and patients struggle to agree on its name, its definition or even whether it exists. But the prognosis is bad. An analysis in 2005 of trials that followed patients for up to five years concluded that the recovery rate is 5 %.

The condition came to physicians attention in the 20 th century after a series of mystery outbreaks in which large numbers of people were struck by unexplained weakness and tirednes. Two striking outbreaks occurred at the Royal Free Hospital in London in the 1950 s and at Lake Tahoe, Nevada, in the 1980 s, where the illness was nicknamed Raggedy Ann syndrome. Then doctors started to see individual cases cropping up in the wider population.

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 there are no agreed diagnostic tests, but the condition is defined as six months or more of persistent wearines that disrupts life and doesnt get better with remainder. 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 Millers, patients stay in bed for long periods.

The symptoms are very similar to those of influenza, and in many cases chronic fatigue does seem to be triggered by viral infections such as glandular fever( although not flu ). The body seems to clear the viral infection, but the tirednes remains. Of adults who get glandular fever, about 12% develop chronic fatigue six months later.

Because there is no clear biological mechanism, the condition has often been claimed to have a psychological cause: psychiatrists in the 1970 s set it down to mass hysteria, while in the 1980 s the press cruelly nicknamed it yuppie flu, with the implication that sufferers were spoiled young people too lazy to work.

Medical authorities now agree that it is a genuine, discrete condition, even though its causes are debated, but many sufferers still feel they are dismissed as hypochondriac who need to pull themselves together.

Tim Noakes, a athletics physiologist at the University of Cape Town, South Africa, became interested in chronic fatigue after find athletes affected by it and realised that it did not fit this stereotype. I find too many professional athletes who wanted to run, the latter are losing everything, and they still couldnt running, he says. The last thing they wanted to do was to be sick.

He believes the answer to the condition lies in the brain. His run analyse athletes with a colleague, Alan St Clair Gibson, left them both remain convinced that, although there is a physical limit to what the body can achieve, the brain acts in advance of this limit, building us feel tired before any signs of damage pass. In other words, fatigue isnt a physical event, but a sensation or emotion, devised by the brain to avoid catastrophic damage. They called the brain system that does this the central governor.

The central governor has got its defines wrong. Its overestimating how fatigued you are, says Noakes. Most of the research into the idea of a central governor involves subtle shifts at the very limits of performance, often in upper-class athletes. But what happens if that entire system crashes? The tirednes 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 highlights the fact that in chronic tirednes the boundaries of physical activity narrow tremendously, to the point where patients are essentially immobilised. If hes right, it would mean that sufferers like Samantha Miller couldnt decide to be more active any more than Mo Farah could decide to shave 20 seconds off his medal-winning times.

But it does hint that their condition might be influenced by psychological factors. Indeed, one of the most robust scientific findings considering chronic tirednes 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 its incurable, its incurable, says Noakes. Although signals from the body are clearly crucial in determining when we tire, ultimately its the brain thats in control.

This also raises the issue of whether cognitive and behavioural therapies could be used to slowly push back the brains draconian restrictions. If interval educate works for athletes by teaching the central governor that ever-greater high levels of exertion are safe, might it also work for patients with chronic fatigue syndrome?

Samantha Miller made a deal with her partner and her sister. She had been referred to a specialist named Peter White at St Bartholomews Hospital in London. Please, simply give him six months, they said. If youre still no better after that, well help you to end your life.

Independently of Noakes, White was developing similar notions about chronic fatigue. He doesnt 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 exercising therapy( GET ), which is intended to work like an ultra-gentle sort 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 quantity of workout, even though their physical fitness is unchanged. Merely as when athletes do repeated sprints, the workout regime slowly retrains the patients brains that each successive activity level is safe.

White also use 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 be recognised 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 are able to, she replied, and for the first time Miller is of the view that it might be true.

Her first exercising 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. Afterward, when she was out of bed, she might try cooking a snack, but the undertaking would be split into components. 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 maintained an activity diary and as the months progressed she was able to do more. Stroll 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 ” activities , 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 run. Id feel hot from the feet up, almost like I was being poisoned. Then Id be ruined for weeks.

It took 5 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 wasnt alone. The outcomes showed that CBT and GET were helpful therapies. But instead of welcome the findings, patient groups disliked 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 therapy like CBT might help patients with CFS and believed that the activity goals of graded exert therapy were downright dangerous. CFS is a purely physical condition with no known remedy, they argued, so anyone helped by either of Whites therapies clearly didnt have it.

Instead, patient groups advocated an approach called pacing. This helps patients adapt to life within the physical restrictions set by the condition and are encouraged to not to do anything that pushes them close to exhaustion. This would make perfect sense if chronic tirednes were incurable. But, according to Whites hypothesis, it could be counter-productive, by reinforcing negative beliefs and acting to maintain the condition rather than permitting patients to recover.

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Chronic fatigue syndrome is one of the most controversial conditions. Researchers, doctors and patients struggle to agree on its name, its definition or even whether it exists. Photograph: Dominic McKenzie for the Observer

Who was right? White and his colleagues decided to do a definitive trial. They worked with the biggest UK patient charity, Action for ME, to design and operate the five-year analyze. It included 641 patients, divided into four groups. A control group just got routine medical care advice on avoiding extremes of activity, plus medications 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 periodical in 2011. They found that APT was ineffective; patients in this group did no better than the controls. But GET and CBT were both moderately helpful, reducing fatigue and disability scores significantly more than in the other two groups. Whats more, 22% of patients recovered after a year in the CBT and GET groups, compared with merely 78% in the other two groups. While thats still not a great success record, it showed that Whites approach was the best treatment available and demonstrated that recovery from the condition is possible.

If the previous trials had gone down poorly, this one was received with absolute fury. The Lancet was spate by letters criticising Whites methods. Action for ME repudiated the findings. One prof called the trial unethical and unscientific in a 43 -page complaint to the journal, while patients use Facebook to ask: When is the Lancet going to retract this fraudulent analyze?

Instead, the publication published an editorialin support of White and his colleagues, saying that they should be praised for he was willing to test vying ideas and interventions in a randomised trial. But it didnt change the attitude of the patient groups. After working for years to fund, organise and run a definitive trial, White finally had the data that he believed could help other chronic wearines patients like Miller. Patients attending his clinics greeted the findings, but he could not persuade ME patient organisations to listen.

The debate over whether chronic fatigue syndrome is biological or psychological still operates hot. In June 2014, two academics from the Essex CFS/ ME service at Southend University Hospital posted an article on the website of the British Medical Journal, speculating that chronic wearines might be a meme. This word was fabricated by the geneticist Richard Dawkins in his book The Selfish Gene( 1976 )~ ATAGEND to describe a psychological idea or behaviour 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 wearines and psychiatric symptoms that affected travellers on develops in the mid-1 9th century and was thought to be due to invisible brain damage caused by the jolty ride. Perhaps, “theyre saying”, some aspects of chronic wearines 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 fear at the relevant recommendations. In online commentaries beneath the article, patients accused the authors of ignorance, bigotry, and outright cruelty, while their ideas were denounced as appalling, sick and warped and batshit crazy. A few days later, the Essex CFS/ ME service wrote to the ME Association distancing itself from the article and went on to say that the authors were very sorry for any distress they may have caused.

According to White, the problem comes from a mindset that imbues medicine, in which illnesses are seen as either biological or psychological. The vast majority of physicians have this dualistic understanding of mind and body, he says. Go and consider a psychiatrist for the intellect and a physician for the body. Its a distinction that leaves chronic wearines patients with only two alternatives: their condition is either biological, currently incurable and impermeable to psychological factors; or theyre hypochondriac who have invented the whole thing. No wonder they are on the defensive.

In fact, argues White, its a false divide. The mind and body unavoidably interact and reflect one another: What is psychological is physical and exactly what he physical has a psychological perception to it, he says. Scientists are increasingly detecting that psychiatric ailments such as schizophrenia or depression reflect structural abnormalities in the brain, while neurological problems such as Parkinsons cause psychological symptoms as well as physical ones.

White points out that, although CBT is often believed to be as a psychological therapy, it has physical impacts 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 positions might help patients to accept that physical and psychological factors are entwined in their illness, he argues, without fear of being stigmatised. Chronic fatigue isnt either biological or psychological. Its both.

It is now two years since Samantha Miller recovered. I do more than a lot of women my age, she says, dipping a strip of pitta bread into her hummus. I cycled here. I manage to co-ordinate my accessories! She has to be careful a challenging motorcycle ride, or getting too emphasized at work, can trigger her symptoms. You have to step back mentally and physically, she says.

So now she takes sick days when shes 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. Running with clay provides a safe space to talk, she says. If the conversation gets difficult, you can go right back to the clay.

She also works as an artist. 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 lifeand meaning. She paints too, haunting mindscapes including a black and blood-red labyrinth of hospital beds and arched windows, entwined with the first lines of Thomas Hardys poem, The Darkling Thrush: I leant upon a coppice gate when frost was spectre-gray. And winters dregs constructed desolate the weakening eye of day.

That poem ends with the joyous anthem of a frail thrush; from the dark death of wintertime, a symbol of blessed hope.

This is an edited extract from Cure by Jo Marchant , published by Canongate, PS16. 99. To order a transcript from the Guardian bookshop at the reduced price of PS13. 59, go to www.bookshop.theguardian.com

Read more: www.theguardian.com

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