Understanding Chronic Fatigue Syndrome

This Guide is designed to help you understand CFS and how it is diagnosed. You'll discover strategies people often use to manage their illness, from energy conservation techniques to acupuncture, chiropractic, massage therapy, cognitive behavioral therapy, and yoga. The guide also reviews established and experimental medications that are used to treat CFS symptoms. Some of these treatments may work for you; some may not. But don’t lose hope. While you’ll likely have to use a trial-and-error approach to find which strategies help you the most, ultimately your health can improve.

Understanding Chronic Fatigue Syndrome Cover

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If you have chronic fatigue syndrome (CFS), you are probably nodding your head in agreement with these statements. This is what it feels like to have CFS, also known as myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS. It’s a mysterious, serious illness that can last for years and causes severe fatigue that doesn’t get better after resting. Typically, it gets worse after physical or mental exertion. Beyond robbing you of energy, it can cause sleep problems. 

CFS has been a controversial diagnosis. Some people—friends, family members, employers, and even doctors—may not believe CFS is a real illness, or a serious illness. That’s because CFS is defined entirely by a person’s symptoms, which are subjective. This raises the question of whether there are any objective, measurable abnormalities of the brain or body in someone with CFS. Based on about 9,000 published studies about the illness in the past 20 years, it has become clear that these abnormalities do exist. CFS is not all in your head.

Some doctors may tell you that there’s nothing to be done for someone with CFS. It’s true that there’s no proven cure or treatment. But if you find the right doctor, one who tailors a treatment plan to your needs, you often can get relief for your symptoms.

The goal of this guide is to help you live your best life despite your illness. It’s designed to help you understand CFS and how it is diagnosed. We’ll also describe the strategies people often use to manage their illness, from energy conservation techniques to acupuncture, chiropractic, massage therapy, cognitive behavioral therapy, and yoga. The guide also reviews established and experimental medications that are used to treat CFS symptoms. Some of these treatments may work for you; some may not. But don’t lose hope. While you’ll likely have to use a trial-and-error approach to find which strategies help you the most, ultimately your health can improve.

About Harvard Medical School Guides

Harvard Medical School Guides delivers compact, practical information on important health concerns. These publications are smaller in scope than our Special Health Reports, but they are written in the same clear, easy-to-understand language, and they provide the authoritative health advice you expect from Harvard Health Publishing.

  • What is chronic fatigue syndrome?
  • Defining CFS
  • What causes CFS?
  • Diagnosing CFS
  • Managing CFS
  • Treating CFS symptoms
  • Seeking wellness despite CFS
  • Resources

How do you know you have CFS?

In 2015, a panel of experts published criteria for diagnosing CFS. The panel was convened by the Institute of Medicine (now known as the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine). The experts concluded that for a person to be diagnosed with CFS, the illness must have caused substantial impairment of normal activities and crushing fatigue that is new in a person’s life. This illness must have lasted at least six months and must be accompanied by several other distinctive symptoms:

• Post-exertional malaise: A “crash” that occurs after you exert yourself physically, mentally, or emotionally, or in response to stress.

• Unrefreshing sleep: Feeling unrested after sleeping many hours, including overnight. People with CFS also report problems with staying asleep, which may explain why they feel unrested on awakening in the morning.

• Cognitive impairments: “Brain fog” and confusion are often described as symptoms of CFS. Problems with attention, memory, and reaction time have been documented. All these symptoms tend to get worse with physical or mental effort, stress, or time pressure. 

• Orthostatic intolerance: Dizziness and lightheadedness that occur or get worse when you sit upright or stand. The symptoms improve, at least in part, if you lie back down or elevate your feet.

Unlike other types of persistent fatigue, which come on gradually, CFS often appears suddenly. For many people, the start of the illness involves symptoms that suggest an infection, such as fever, sore throat, or aching muscles. Many people with CFS continue to have pain and aches in their muscles and joints, headaches, and swollen lymph nodes in the neck and under the arms.

The brains of people with CFS feel any painful stimuli more easily, a condition known as central sensitization. As one person wrote to the Institute of Medicine expert panel, “When I do any activity that goes beyond what I can do—I literally collapse—my body is in major pain. It hurts to lay in bed, it hurts to think, I can’t hardly talk—I can’t find the words. I feel my insides are at war.”
People with CFS also can have
• digestive problems
• impaired ability to regulate body temperature, resulting in chills and night sweats
• allergies or sensitivities to foods, odors, or chemicals
• intolerance of noise and bright light.

The symptoms of CFS tend to wax and wane, and the illness can be unpredictable and variable. But most people remain impaired to some degree, even on their good days. One-quarter of people with CFS are unable to leave their beds for months at a time because of the severe fatigue and other symptoms.

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