Chronic Fatigue Syndrome – A Toolkit for Providers

Institute of Medicine committee releases report on ME/CFS; CDC archives CFS Toolkit

On February 10, 2015, the Institute of Medicine (IOM) Committee on Diagnostic Criteria for Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome released a report titled “Beyond Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome: Redefining an Illness.” The IOM Committee’s work was supported by the Department of
Health and Human Services (HHS) Office on W omen’s Health and other HHS agencies.

The website of the HHS Chronic Fatigue Syndrome Advisory Committee includes the following comment about
the IOM committee report: “With their recommendation of a streamlined, yet evidence-based set of diagnostic
criteria, the IOM committee has taken a critical step toward assisting medical providers in making a diagnosis for
those with this serious and debilitating illness.” The website also states that the HHS agencies are committed to
working with partners, stakeholders, experts in the field, and CFSAC to review the report’s recommendations and
appropriate next steps.

In 2011, CDC posted the CFS Toolkit on its website to provide an easy-to-use resource for clinical care. During
recent months CDC scientists had been working with CFSAC and others to revise the CFS Toolkit. After
publication of the IOM committee report, CDC decided to archive the CFS Toolkit. Those interested in reviewing
the CFS Toolkit in its entirety can view the document below.

National Center for Emerging and Zoonotic Infectious

Division of High-Consequence Pathogens and Pathology (DHCPP)
Chronic Fatigue Syndrome
A Toolkit for Providers
CFS Toolkit
Introduction to the Toolkit
Chronic fatigue syndrome (CFS) is a complex and serious
illness. The CFS toolkit was prepared to provide a 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.

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 Diagnosis
Because there is no specific A clinician should consider a ••Unrefreshing sleep
test to diagnose CFS, the diagnosis of CFS if these two ••Muscle pain
diagnosis is made through criteria are met:
clinical and laboratory
••Multi-joint pain without
1. Unexplained, persistent swelling or redness
examinations to exclude
other conditions. A detailed fatigue present for 6 ••Headaches of a new type
patient history and thorough months or more that or severity
physical and mental status is not due to ongoing ••Sore throat that’s
examination will help in exertion; is not frequent or recurring
making the diagnosis. A substantially relieved by
rest, is of new onset (not ••Tender cervical or
series of laboratory tests will axillary lymph nodes
help identify or rule out other lifelong) and results in a
possible causes of symptoms. significant reduction in
A diagnosis of CFS-like illness previous levels of activity
could be made if a patient 2. Four or more of the
has been fatigued for 6 following symptoms are
months or more, but does not present for six months or
meet the symptom criteria or more:
the rest or activity criteria of ••Impaired memory or
fatigue for CFS. concentration
••Postexertional malaise
(extreme, prolonged
exhaustion and sickness
following physical or
mental activity)

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How to Make a Diagnosis
In order to diagnose CFS, health practitioners must rule out medical and psychiatric conditions
with similar symptoms by giving:
1. A detailed patient history
2. A thorough physical examination
3. Mental status screening
4. Laboratory screening tests

International CFS Case Definition (1994)

1. Severe chronic fatigue of 6 months or longer that is not explained by any medical or psychiatric diagnosis
2. Have 4 or more of the following 8 symptoms:
•• post-exertional malaise lasting more than 24 hours •• multi-joint pain without swelling or redness
•• unrefreshing sleep •• sore throat
•• significant impairment in short term memory or •• tender lymph nodes
concentration •• headaches of a new type, pattern, or severity
•• muscle pain

Recommended laboratory screening tests

••CBC with differential ••Albumin
••Total protein ••ANA and rheumatoid factor
••Glucose ••Globulin
••C-reactive protein ••Calcium
••Phosphorus ••Alanine aminotransferase (ALT) or
••Electrolytes aspartate transaminase serum level (AST)
••Alkaline phosphatase ••Thyroid function tests (TSH and Free T4)
••Creatinine ••Urinalysis
••Blood urea nitrogen (BUN)
Illnesses that may resemble CFS
It is important for persons with symptoms of CFS to consult a physician. CFS symptoms resemble
those of many treatable medical and psychiatric conditions. These include sleep disorders,
depression, alcohol/substance abuse, diabetes, hypothyroidism, mononucleosis (mono), lupus,
multiple sclerosis (MS), chronic hepatitis and various malignancies. Lab tests, medical history, and
exams can help identify specific diseases.

If identified conditions are adequately treated and CFS symptoms continue, the patient could be
considered to have CFS. This should not prevent continued medical monitoring of the patient.

CFS and other illnesses

People with CFS also are more likely to have obesity, insulin resistance, metabolic syndrome,
irritable bowel disease, non-melancholic depression, fibromyalgia, chemical-sensitivity disorder;
these conditions should be evaluated if the patient appears symptomatic. It is important for persons
with CFS to continue to see their healthcare provider and report changes in symptoms. Sometimes
a person diagnosed with CFS may have other symptoms which could be resolved with treatment.

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 Treatment and
Management
Managing chronic fatigue The management of CFS may
syndrome can be as complex require working with a team
as the illness itself. There is of doctors and other health
no cure yet, no prescription care practitioners, which
drugs have been developed might include mental health
specifically for CFS, and professionals, rehabilitation
symptoms vary considerably specialists, and physical or
over time. exercise therapists, to create
an individualized treatment
program. This program
should be based on a combi-
nation of therapies that
address coping techniques,
symptoms and activity man-
agement. If a team approach
is not practical, primary care
providers can address the
individual’s needs.

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Rationale for Treatment and
Management
Rationale for Management
••Treat other illnesses or conditions occurring at the same time as CFS or underlying medical/
psychiatric conditions.
••Identify the most bothersome symptoms.
••Employ drug therapy to relieve symptoms.
••Empower the patient to be active in managing the illness.
Drug therapies
••Use as few medications as possible.
••Remember that supplements and over-the-counter drugs can interact with prescription drugs
and cause side-effects, please remind CFS patients to consult with a clinician before taking
any of these medications.
••Start with a small dose because many CFS patients are sensitive to medications.
••Narcotics are not indicated for management of CFS-associated pain.
••Medicine for pain or discomfort should be limited to acetaminophen, aspirin, or NSAIDS
(nonsteroidal anti-inflammatory drugs).
••Do not routinely use sleep medications to treat sleep problems. Sleep medication should be
prescribed based on patient’s responses to a complete sleep history.
••Treat clinical depression only. People with CFS may show signs of depression, but not have
depression. Prescribing drugs for depression when a person is not depressed may make
symptoms worse.
••Use caution in prescribing/taking antidepressants. Some antidepressants may make individual
CFS symptoms worse or cause side effects.
••While use of a multivitamin is generally recommended for people who do not have balanced
diets, it is not beneficial to buy trendy, expensive vitamins that have no effect on fatigue or pain.
••Avoid unsafe herbal remedies like comfrey, ephedra, kava, germander, chaparral, bitter
orange, licorice root, and yohimbe.

Non-drug therapies
••Consider complementary therapies like acupuncture, gentle massage, deep breathing,
relaxation therapy, yoga, or tai chi to increase energy and decrease pain.
••Suggest stretching and light exercise before bed.
••Help patients cope with memory difficulties by suggesting the use of organizers and
schedulers. Puzzles, word games, and card games are other options to help increase focus.

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 Coping Skills for CFS
Adjusting and coping 1 A supportive counselor Because chronic illnesses like
with the realities of CFS can help patients cope CFS impact the entire family,
are important to feeling with the diagnosis of long not just the patient, family
healthier. There are three term illness, as well as the education and counseling
ways that a person with CFS anxiety, depression, grief, may be helpful in talking
can strengthen their coping anger and guilt that often about changes in family
skills with emotional and accompany chronic illness. dynamics related to living
psychosocial issues: with CFS.
2 CFS support groups can
serve as a positive resource
and social outlet for people
with CFS.

3 For those who have enough

energy to work, they
should find appropriate
employment and live as
independently as they can.

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Emotional Issues and
Coping Solutions
Emotional issues
In addition to routine CFS symptoms, people with CFS may face emotional issues besides their
symptoms such as:
••Problems coping with variable and unpredictable symptoms
••Uncertainty about the future of their personal health
••Feeling guilty, abandoned, and lonely
The following life changes can result from having CFS:
••Loss of independence, livelihood, and financial security
••Changes in relationships with family and friends
••A decrease in stamina that interferes with activities of daily living
••Memory and concentration problems that seriously impact work or school performance
It is normal for people with CFS to feel overwhelmed. However, in order to feel better, people
should seek support to work through their emotions.

Solutions
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.
1. Professional counseling. Get professional counseling, which can help people with CFS cope
with their illness. A counselor can help people address their feelings of anxiety, depression,
grief, anger, and guilt with problem solving techniques, standard psychotherapy, and
counseling methods. Combined medication and psychotherapy may be appropriate in some
situations.
2. Support Group. CFS support groups can serve as a positive resource and social outlet for
people with CFS. Support group members share tips and experiences for living with CFS.
Going to group meeting can also get people with CFS out of the house and connected with
others who understand their situation.
3. Working/not working with a disability. For those who have enough energy to work, they
should find employment that is favorable to their condition and live as independently as they
can.
For people with CFS who are severely impaired and unable to work, it is important for them to
accept and cope with the fact that they are temporarily unable to work and must utilize disability
benefits. Doctors can help these persons with CFS by keeping good notes and using simple
assessment tools to track health status for documentation purposes.

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 Cognitive Behavioral
Therapy (CBT)
Cognitive behavioral therapy, CBT has been shown to be
or CBT, is an individualized, effective for some patients
structured, goal-oriented with CFS, but it must be paced,
form of therapy often personalized, and tailored to
prescribed to help chronically the individual’s level.
ill patients cope with illness
and develop behaviors and
strategies that help improve
symptoms.

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Using Cognitive Behavioral
Therapy to Help CFS Patients
Cognitive behavioral therapy (CBT) aims to change symptoms and illness
supporting behaviors.
••CBT is used for medical and psychological illnesses. It has also been used to
help people recover from cardiovascular disease, sleep disorders, diabetes,
cancer, and orthopedic injuries.
••CBT has been shown to be effective for some patients with CFS.
••CBT makes patients aware of the stressors that make symptoms worse.
••CBT is often combined with increased physical activity or gradual exercise
therapy.
••Trained healthcare professionals, such as psychologists, nurses, physical
therapists, occupational therapists, can all guide a person through CBT.
••CBT must be paced, personalized, and tailored to the individual’s level.
••In order for CBT to be successful, people in CBT must take personal
responsibility for change.
••If CBT is not covered by insurance, people with CFS can substitute a provider
who is knowledgeable about CFS. This provider can lead CFS patients to
understand how their behavior is impacting the illness, and set up activity
and exercise programs that are useful.
Local mental health professional groups, physical and occupational therapists, or
health care organizations can be contacted to find a certified cognitive therapist.

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 Graded Exercise
Therapy (GET)
Graded exercise therapy Activities need to be spread
(GET) has shown to be very evenly throughout the day
helpful to some CFS patients. and should not make symp-
Graded activity and exercise toms worse. If activities are
is defined as starting from not spread out, patients will
a very low, basic level of “push” themselves too much
exercise and/or activity and and “crash”.
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.

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Avoiding the Push-Crash Cycle
with Graded Exercise Therapy
Activity Pacing
Activity pacing is recommended for many people with CFS. Pacing refers to
taking activities such as doing laundry or shopping, and breaking it into small
manageable tasks with rest breaks in between. Activities should be spread
evenly throughout the day and should not make symptoms worse. If activities or
exercises are not spread out, a “push - crash” cycle will occur. “Push - crash” cycle
is when a person does too much all at once, crashes, rests, starts to feel better
and does too much once again.

Graded Exercise Therapy

••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.
••People that have done no exercise or activity for a long period of time and
feel very weak should only do a basic activity (ex: stretching, walking, or
biking for a few minutes). They should not feel tired after the activity. If the
activity does induce tiredness, it should be lessened.
••If any of the symptoms of CFS get worse after adding activity, people should
return to the last level of activity where they felt comfortable.
••Lifting light weights and stretching can help some people with CFS feel
better. People can start with using their body weight (for example, raising
their arms) and gradually increase to wall push ups, modified chair dips, and
toe raises. Strengthening activity should precede aerobic activity.
••Very ill people who are housebound or bedbound can start with working
on picking up and grasping objects. Activity should be increased until the
person can handle activities of daily living such as getting up, dressing,
moving around the house and brushing teeth. Having CFS does not mean
that a person should avoid these activities, but instead means they should
go slowly when starting a new activity.
••The GET Guide 2008 by Chronic Fatigue Syndrome/ME Service at
St. Bartholomew’s Hospital can be helpful in structuring your graded
exercise plan.

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 CFS Sleep Issues
The majority of CFS patients Health professionals can help watching TV, reading, or
experience some form of people with CFS adopt good working on a computer
problems with sleep. Most sleeping habits. Patients ••control noise, light and
CFS patients experience should be advised to practice temperature in the
non-restorative sleep as standard sleep hygiene bedroom
compared to their pre-illness techniques:
experience.
••avoid caffeine within 6
••schedule regular sleep hours of bedtime, and
and wake times—try to alcohol and tobacco
get up at the same time within 2 hours of bedtime
everyday ••light exercise and
••establish a regular stretching earlier in the
bedtime routine, which day, at least four hours
may include a warm bath before bedtime, may also
or shower, or listening to improve sleep.
soothing music When sleep hygiene is
••avoid napping during not successful, the use of
the day pharmaceutical drugs may be
indicated.
••incorporate an extended
wind-down period
••use the bedroom only
for sleep and sex; not for
other activities such as

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Sleep Therapy
The majority of CFS patients complain of some form of sleep-related symptoms. Sleep deprivation
or disruption may cause or worsen other symptoms such as fatigue, memory problems, headaches
and joint pain. Treating sleep problems should occur early in the CFS treatment program.
A doctor should set up a consult with a sleep specialist or schedule a sleep study if a person with
CFS symptoms identifies problems consistent with:
••sleep apnea (pauses in breathing or shallow breaths while sleeping)
••restless leg syndrome ( uncontrolled movements of the lower legs and “crawly” sensations in
the calves)
••sleep phase abnormalities
••persistent/recurrent daytime sleeping
••If insurance or other matters prevent a consultation with a sleep specialist, patients should
speak to their primary care physicians about sleep problems.
••People with CFS symptoms should practice good sleeping habits (also known as sleep
hygiene).
••Medications can be considered in the absence of specific sleep disorders if sleep hygiene
is not successful. A short-term trial of sedating antihistamines or over-the-counter sleep
products may assist initiation of good sleep hygiene.
••If this approach is not beneficial, then a trial of a prescription sleep medicine in the smallest
possible dose may be warranted. Sleep medication for such patients should only be
prescribed pending a complete sleep history and evaluation by a sleep specialist.
••Long term use of hypnotics is not recommended by many sleep specialists.
Sleep Hygiene Tips
••Go to bed at the same time each night and rise at the same time each morning.
••Make sure your bedroom is a quiet, dark, and relaxing environment, which is neither too hot
nor too cold.
••Make sure your bed is comfortable and use it only for sleeping and sex and not for other
activities, such as reading, watching TV, or listening to music. Remove all TVs, computers, and
other “gadgets” from the bedroom.
••Physical activity may help promote sleep, but not within a few hours of bedtime.
••Avoid large meals before bedtime.

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 Contact Information Para mas información

Centers for Disease Control and Prevention

1600 Clifton Road
Atlanta, GA 30333
800-CDC-INFO
(800-232-4636)
TTY: (888) 232-6348
24 Hours/Every Day
[email protected]

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