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CDC CFS Toolkit

Introduction to the Toolkit

Chronic fatigue syndrome (CFS) is a complex and serious illness. The CFS toolkit was prepared to provide quick and easy-to-use resource for clinical care. It provides the best practices for diagnosing, treating and managing CFS. The approach may also be considered for people with CFS-like illnesses.

Healthcare professionals can use this toolkit to work with patients suffering from CFS by managing symptoms, improving function, conserving energy (for example, not becoming overtired), and monitoring activity levels. Even though there is no cure yet for CFS, there are treatment options that improve CFS patients’ quality of life and increase daily living activities.

Toolkit Download

The full toolkit can be downloaded in the following PDF versions:

To order printed copies of the toolkit, click here.

Sections in the Toolkit

Making a Diagnosis

Because there is no specific test to diagnose CFS, the diagnosis is made through clinical and laboratory examinations to exclude other conditions. A detailed patient history and thorough physical and mental status examination will help in making the diagnosis. A series of laboratory tests will help identify or rule out other possible causes of symptoms. A diagnosis of CFS-like illness could be made if a patient has been fatigued for 6 months or more, but does not meet the symptom criteria or the rest or activity criteria of fatigue for CFS.

A clinician should consider a diagnosis of CFS if these two criteria are met:

  1. Unexplained, persistent fatigue present for 6 months or more that is not due to ongoing exertion; is not substantially relieved by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.
  2. Four or more of the following symptoms are present for six months or more:
    • Impaired memory or concentration
    • Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
    • Unrefreshing sleep
    • Muscle pain
    • Multijoint pain without swelling or redness
    • Headaches of a new type or severity
    • Sore throat that's frequent or recurring
    • Tender cervical or axillary lymph nodes

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Treatment and Management

Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure yet, no prescription drugs have been developed specifically for CFS, and symptoms vary considerably over time.

The management of CFS may require working with a team of doctors and other health care practitioners, which might include mental health professionals, rehabilitation specialists, and physical or exercise therapists, to create an individualized treatment program. This program should be based on a combination of therapies that address coping techniques, symptoms and activity management. If a team approach is not practical, primary care providers can address the individual’s needs.

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Coping with CFS

Adjusting and coping with the realities of CFS are important to feeling healthier. There are three ways that a person with CFS can strengthen their coping skills with emotional and psychosocial issues:

  • A supportive counselor can help patients cope with the diagnosis of long term illness, as well as the anxiety, depression, grief, anger and guilt that often accompany chronic illness.
  • CFS support groups can serve as a positive resource and social outlet for people with CFS.
  • For those who have enough energy to work, they should find appropriate employment and live as independently as they can.

Because chronic illnesses like CFS impact the entire family, not just the patient, family education and counseling may be helpful in talking about changes in family dynamics related to living with CFS.

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Cognitive Behavioral Therapy

Cognitive behavioral therapy, or CBT, is an individualized, structured, goal-oriented form of therapy often prescribed to help chronically ill patients cope with illness and develop behaviors and strategies that help improve symptoms.

CBT has been shown to be effective for some patients with CFS, but it must be paced, personalized, and tailored to the individual’s level.

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Graded Exercise Therapy (GET)

Graded exercise therapy (GET) has shown to be very helpful to some CFS patients. Graded activity and exercise is defined as starting from a very low, basic level of exercise and/or activity and gradually increasing it to a level where people can go about their daily life. NOTE: the level of activity may not be the same as before the CFS diagnosis.

Activities need to be spread evenly throughout the day and should not make symptoms worse. If activities are not spread out, patients will "push" themselves too much and "crash".

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Sleep

The majority of CFS patients experience some form of problems with sleep. Most CFS patients experience non-restorative sleep as compared to their pre-illness experience.

Health professionals can help people with CFS adopt good sleeping habits. Patients should be advised to practice standard sleep hygiene techniques:

  • schedule regular sleep and wake times - try to get up at the same time everyday
  • establish a regular bedtime routine, which may include a warm bath or shower, or listening to soothing music
  • avoid napping during the day
  • incorporate an extended wind-down period
  • use the bedroom only for sleep and sex; not for other activities such as watching TV, reading, or working on a computer
  • control noise, light and temperature in the bedroom
  • avoid caffeine within 6 hours of bedtime, and alcohol and tobacco within 2 hours of bedtime
  • light exercise and stretching earlier in the day, at least four hours before bedtime, may also improve sleep.

When sleep hygiene is not successful, the use of pharmaceutical drugs may be indicated.

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