Manual A Mystery Illness: My Experience Coping with Chronic Fatigue Syndrome

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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.

Chronic fatigue syndrome saps its victims, but new research may find the cause

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. 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. 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. But walking five minutes might put you in bed for three weeks. If she pushed herself too hard, she would crash.

It took five years of grim determination, but she finally clawed her way out of the fatigue and back into a normal life. But instead of welcoming the findings, patient groups hated them. 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. 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 run the five-year study.

Life With Chronic Fatigue Syndrome

It included 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 researchers published their results in the Lancet medical journal in 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.

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Chronic fatigue patients criticise study that says exercise can help

WordPress Shortcode. Full Name Comment goes here. This event at the Philadelphia County Medical Society can help equip doctors to provide us with the best possible care. Jennie Spotila is a writer and advocate who lives in King of Prussia, Pa. She writes about ME at occupyme.

Event details: Philadelphia County Medical Society presents a screening of Unrest and expert panel discussion, Wednesday, November 14, from to p. Get the news you need to start your day. Skip to content. Shining a light on chronic fatigue syndrome, a little understood disease among doctors. Jennie Spotila in an undated photo. Courtesy of Jennie Spotila. I've been sick for 24 years, and I get comments like this a lot.

A Mystery Illness: My Experience Coping with Chronic Fatigue Syndrome - Dorrance Bookstore

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