Treatment of CFS
•· Since there is no known cure for CFS, treatment is aimed at symptom relief and improved function. A combination of drug and nondrug therapies is usually recommended.
•· No single therapy exists that helps all CFS patients.
•· Lifestyle changes, including prevention of overexertion, reduced stress, dietary restrictions, gentle stretching and nutritional supplementation, are frequently recommended in addition to drug therapies used to treat sleep, pain and other specific symptoms.
•· Carefully supervised physical therapy may also be part of treatment for CFS. However, symptoms can be exacerbated by overly ambitious physical activity. A very moderate approach to exercise and activity management is recommended to avoid overactivity and to prevent deconditioning.
•· Although health care professionals may hesitate to give patients a diagnosis of CFS for various reasons, it's important to receive an appropriate and accurate diagnosis to guide treatment and further evaluation.
•· Delays in diagnosis and treatment are thought to be associated with poorer long-term outcomes. For example, CDC's research has shown that those who have CFS for two years or less were more likely to improve. It's not known if early intervention is responsible for this more favorable outcome; however, the longer a person is ill before diagnosis, the more complicated the course of the illness appears to be.
Recovery from CFS
•· CFS affects each individual differently. Some people with CFS remain homebound and others improve to the point that they can resume work and other activities, even though they continue to experience symptoms.
•· Recovery rates for CFS are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up. However, full recovery from CFS may be rare, with an average of only 5% to 10% sustaining total remission.
Possible Causes of CFS
•· Despite an intensive, nearly 20-year search, the cause of CFS remains unknown. Many different infectious agents and physiologic and psychological causes have been considered, and the search continues.
•· Much of the ongoing research into a cause has centered on the roles of the immune, endocrine and nervous systems may play in CFS. More recently, interactions among these factors are under evaluation.
•· Genetic and environmental factors may play a role in developing and/or prolonging the illness, although more research is needed to confirm this. CDC is applying cutting-edge genomic and proteomic tools to understand the origins and pathogenesis of CFS.
•· CFS is not caused by depression, although the two illnesses often coexist, and many patients with CFS have no psychiatric disorder
Chronic fatigue syndrome shares symptoms with many other disorders. Fatigue, for instance, is found in hundreds of illnesses, and 10% to 25% of all patients who visit general practitioners complain of prolonged fatigue. The nature of the symptoms, however, can help clinicians differentiate CFS from other illnesses.
On this page
•· Primary Symptoms
•· Other Common Symptoms
•· Clinical Course
•· Diagnostic Resources
Primary Symptoms
As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.
People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.
A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:
•· cognitive dysfunction, including impaired memory or concentration
•· postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
•· unrefreshing sleep
•· joint pain (without redness or swelling)
•· persistent muscle pain
•· headaches of a new type or severity
•· tender cervical or axillary lymph nodes
•· sore throat
Other Common Symptoms
In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:
•· irritable bowel, abdominal pain, nausea, diarrhea or bloating
•· chills and night sweats
•· brain fog
•· chest pain
•· shortness of breath
•· chronic cough
•· visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
•· allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
•· difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
•· psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
•· jaw pain
•· weight loss or gain
Clinicians will need to consider whether such symptoms relate to a comorbid or an exclusionary condition; they should not be considered as part of CFS other than they can contribute to impaired functioning.
Clinical Course
The severity of CFS varies from patient to patient, with some people able to maintain fairly active lives. By definiton, however, CFS significantly limits work, school and family activities.
While symptoms vary from person to person in number, type and severity, all CFS patients are functionally impaired to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.
CFS often follows a cyclical course, alternating between periods of illness and relative well-being. Some patients experience partial or complete remission of symptoms during the course of the illness, but symptoms often reoccur. This pattern of remission and relapse makes CFS especially hard for patients and their health care professionals to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, which can exacerbate symptoms and fatigue and cause a relapse. In fact, postexertional malaise is a hallmark of the illness.
The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that the sooner symptom management begins, the better the chance of a positive therapeutic outcome. This means early detection and treatment are of utmost importance. CDC research indicates that delays in diagnosis and treatment may complicate and prolong the clinical course of the illness.
Diagnostic Challenges
Diagnosing chronic fatigue syndrome (CFS) can be challenging for health care professionals. A number of factors add to the complexity of making a CFS diagnosis: 1) there's no diagnostic laboratory test or biomarker for CFS, 2) fatigue and other symptoms of CFS are common to many illnesses, 3) CFS is an invisible illness and many patients don't look sick, 4) the illness has a remitting and relapsing course , 5) symptoms vary from person to person infrequency and severity, and 6) no two CFS patients have exactly the same pattern of symptoms.
These factors have contributed to an alarmingly low diagnosis rate. Of the four million Americans who have CFS, less than 20% have been diagnosed.
Overcoming the Challenges
In spite of these challenges, CFS can be diagnosed in a primary care setting. The 1994 International Case Definition for CFS forms the basis of a reliable diagnostic algorithm for CFS, particularly in adults.
While there is evidence that children can get CFS, current research suggests that the illness isn't prevalent in younger children, particularly those under the age of 11. Diagnosing pediatric CFS can be more difficult than adult CFS because children may have difficulty recognizing and verbalizing their symptoms, and because they have a remarkable ability to become accustomed to symptoms and adapt to them. Clinicians assessing adolescents for CFS should exercise judgment based on the course of the illness and the patient's medical history.
How Physicians Diagnose CFS
If a patient has had 6 or more consecutive months of severe fatigue that is reported to be unrelieved by sufficient bed rest and that is accompanied by nonspecific symptoms, including flu-like symptoms, generalized pain, and memory problems, the physician should further investigate the possibility that the patient may have CFS. The first step in this investigation is obtaining a detailed medical history and performing a complete physical examination of the patient. Initial testing should include a mental status examination, which ordinarily will involve a short discussion in the office or a brief oral test. A standard series of laboratory tests of the patient's blood and urine should be performed to help the physician identify other possible causes of illness. If test results suggest an alternative explanation for the patient's symptoms, additional tests may be performed to confirm that possibility. If no cause for the symptoms is identified, the physician may render a diagnosis of CFS if the other conditions of the case definition are met (see What Is CFS?). A diagnosis of insufficient fatigue could be made if a patient has been fatigued for 6 months or more, but does not meet the symptom criteria for CFS.
An Empirical Definition
Recently the definitional criteria have reached using information derived from 3 questionnaires: MOS SF-36, Multidimensional Fatigue Inventory, and the CDC Symptom Inventory (Reeves et al, 2005). This approach can be useful in identifying patient and in monitoring their illness course or response to treatment.
Appropriate Tests for Routine Diagnosis of CFS
While the number and type of tests performed may vary from physician to physician, the following tests constitute a typical standard battery to exclude other causes of fatiguing illness: alanine aminotransferase (ALT), albumin, alkaline phosphatase (ALP), blood urea nitrogen (BUN), calcium, complete blood count, creatinine, electrolytes, erythrocyte sedimentation rate (ESR), globulin, glucose, phosphorus, thyroid stimulating hormone (TSH), total protein, transferrin saturation, and urinalysis. Further testing may be required to confirm a diagnosis for illness other than CFS. For example, if a patient has low levels of serum albumin together with an above-normal result for the blood urea nitrogen test, kidney disease would be suspected. The physician may choose to repeat the relevant tests and possibly add new ones aimed specifically at diagnosing kidney disease. If autoimmune disease is suspected on the basis of initial testing and physical examination, the physician may request additional tests, such as for antinuclear antibodies.
Psychological/Neuropsychological Testing
In some individuals it may be beneficial to assess the impact of fatiguing illness on certain cognitive or reasoning skills, e.g., concentration, memory, and organization. This may be particularly relevant in children and adolescents, where academic attendance, performance, and specific educational needs should be addressed. Personality assessment may assist in determining coping abilities and whether there is a co-existing affective disorder requiring treatment.
Theoretical and Experimental Tests
A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time.
Symptomatic Treatment
People with CFS present with different patterns of primary symptoms. Symptom severity can also vary considerably. Clinicians should query patients about which symptoms are most disruptive or disabling and tailor the management plan accordingly. Treatment can be directed toward the most problematic symptoms as prioritized by the patient, but only after underlying conditions applicable to those symptoms have been investigated and excluded.
Primary symptoms may include sleep problems, muscle and joint pain, cognitive dysfunction, fatigue, headaches and sore throat. Gastrointestinal complaints, orthostatic instability, depression and allergies are also seen in many patients. Aggressive symptom management for these and other disruptive symptoms is indicated.
Pharmacologic Therapy
Pharmacologic therapy is directed toward the relief of specific symptoms experienced by the individual patient. There are many over-the-counter and prescription drug therapies that can be used to treat sleep difficulties, cognitive problems, pain and other symptoms of CFS.
Many CFS patients are sensitive to medications, particularly sedating medications. Therapeutic benefits can often be achieved at lower than normal dosages, so try prescribing a fraction of the usual recommended dose to start and gradually increase as necessary and as tolerated. All medications can cause side effects, which may lead to new symptoms or exacerbate existing symptoms, so it is important to routinely monitor all prescription drugs, OTC therapies and supplements the patient is taking.
Some drugs act on multiple body systems and symptoms. For instance, tricyclic antidepressants may not only improve mood, but may help with sleep and pain. Prescribing such drugs allows the use of fewer medications to address multiple symptoms with minimal side effects.
Nutritional and Herbal Supplements
Nutritional supplements and vitamins are frequently used by people with CFS for symptom relief. While there have been few clinical trials and many CFS patients report symptom relief with supplements, these products are unregulated, and information on potency and side effects is frequently unknown. The health care professional needs to question patients about supplement use and OTC products to determine safety, efficacy and possible negative interactions with prescribed medications and therapies
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Patients should be advised to avoid herbal remedies like comfrey, ephedra, kava, germander, chaparral, bitter orange, licorice root, yohimbe and any other supplements that are potentially dangerous.
Nutritional supplements can't take the place of good diet and nutrition and, as such, a well-balanced diet should be encouraged. Some people with CFS report sensitivities to various foods or chemicals, including refined sugar, caffeine, alcohol and tobacco, all of which should be minimized to promote optimum health.
Alternative Therapies
Alternative therapies are often explored by CFS patients to relieve symptoms. Encourage patients to discuss such options with a health care professional to make sure they are safe and effective. Acupuncture, aquatic therapy, gentle massage, meditation, deep breathing, biofeedback, yoga, tai chi and massage therapy have been found to help some patients and are often prescribed for CFS symptom management.
Sleep Disturbances
The majority of CFS patients experience some form of sleep dysfunction. Common sleep complaints include difficulty falling asleep, hypersomnia, frequent awakening, intense and vivid dreaming, restless legs and nocturnal myoclonus. Most CFS patients experience nonrestorative sleep as compared to their pre-illness experience.
Health professionals can help people with CFS adopt good sleep habits. Patients should be advised to practice standard sleep hygiene techniques: establish a regular bedtime routine; avoid napping during the day, incorporate an extended wind-down period; use the bed only for sleep and sex; schedule regular sleep and wake times; control noise, light and temperature; and avoid caffeine, alcohol and tobacco. Light exercise and stretching earlier in the day, at least four hours before bedtime, may also improve sleep.
When sleep hygiene isn't successful, the use of pharmaceuticals may be indicated. Initial medications to consider are simple antihistamines or over-the-counter sleep products. If this isn't beneficial, then start with a prescription sleep medicine in the smallest possible dose and briefest period possible.
Unrefreshing sleep can be present even though medications may help patients achieve requisite hours of sleep. A sleep specialist should evaluate patients whose sleep remains non-restorative following standard interventions.
Primary sleep disorders such as sleep apnea and narcolepsy exclude the diagnosis of CFS, and most people with such disorders respond to therapy. It is imperative to obtain a careful sleep history. The Pittsburgh Sleep Questionnaire, a validated 19-question tool, or a brief sleep survey adapted from the CDC Symptom Inventory can be useful in assessing sleep problems and tracking effectiveness of sleep management interventions.
Pain
CFS pain occurs both in muscles (sometimes described as "deep pain") and joints (arthralgias). Patients may also complain of headaches (typically pressure-like) and allodynia, which is generalized hyperalgesia or soreness of the skin to touch.
Most pain therapy begins with simple analgesics like acetaminophen, aspirin or NSAIDS..Additional therapy can be managed by a pain specialist. Counseling for pain management techniques is advisable for patients with this kind of unremitting pain.
Pain management should include nonpharmacological modalities and alternative therapies. Stretching and movement therapies, gentle massage, heat, toning exercises, hydrotherapy and relaxation techniques can be helpful for CFS care. Acupuncture, when administered by a qualified practitioner who is knowledgeable about CFS, may be effective for pain management in some patients.
Orthostatic Instability
Some patients with CFS may also exhibit symptoms of orthostatic instability, in particular frequent dizziness and light-headedness. Depending on severity and clinical judgment, these patients should be referred for evaluation by a cardiologist or neurologist. Specific treatment for orthostatic instability should only be initiated following confirmed diagnosis and by clinicians experienced in evaluating therapeutic results and managing possible complications.
Treatments for orthostatic problems include volume expansion for CFS patients who don't have heart or blood vessel disease. If symptoms don't improve with increased fluid and salt intake, prescription medications and support hose can be prescribed.
During office visits, provide a place for CFS patients to recline if they have difficulty staying upright for more than a few minutes at a time.
Depression
Research shows that CFS is not a form of psychiatric illness or depression. However, many people with chronic illnesses, including those with CFS, may suffer from secondary depression as the patient makes the multiple adjustments to having a debilitating, chronic illness.
As many as half of CFS patients develop depression sometime during the course of the illness. When it's present, it needs to be treated. Although treating depression can reduce anxiety and stress, it's not a cure for CFS.
Professionals are advised to use caution in prescribing antidepressants. Antidepressant drugs of various classes have other effects that may act on other CFS symptoms and/or cause side effects.
There are brief psychiatric screening tools available that can be administered and scored in the primary care setting, such as the Beck Depression Inventory and the PHQ9. Results of these screening tools that point to a possible underlying depression or other psychological disorder necessitate a referral to a mental health professional.
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Cognitive Dysfunction
Memory and concentration complaints are two of the more distressing symptoms reported by people with CFS. Relaxation and meditation training and memory aids, such as organizers, schedulers and written resource manuals, can be helpful in addressing cognitive problems. Stimulating the mind with puzzles, word games, card games and other activities may also be beneficial for some patients.
Clinicians may want to refer some CFS patients to behavioral health professionals to help them problem-solve and develop specific techniques for conducting activities of daily living that have become difficult. Referral to a neuropsychologist, neurologist or psychiatrist for evaluation and testing may be necessary in severe cases to determine whether other underlying conditions may be involved. It should be noted that training to improve cognition is a highly specialized therapy and requires input of trained behavioral health clinicians.
Use caution in prescribing stimulants for cognitive problems. Mild stimulants may be helpful for some patients, but stronger stimulants can precipitate the push-crash cycle and cause relapse.
