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Suggested Guidelines for Clinicians to Assist in the
Management and Treatment of Chronic Fatigue Syndrome

     Chronic Fatigue Syndrome is just what its name states. That is, it is a group of patient complaints that form a pattern, or in this case, several patterns. The recognition of these patterns depends on the physician obtaining a detailed history. The primary requirement is debilitating fatigue that has been present for at least six months. The fatigue might be a new complaint, but not necessarily of sudden onset. Reasonable effort must be made to exclude other causes, either medical or psychological in origin.

Some conditions that exclude the diagnosis of CFS include:

• Any active medical condition that may explain the presence of chronic fatigue. Examples include untreated hypothyroidism, sleep apnea, narcolepsy, and side effects of medications.
• Any previously diagnosed medical condition whose resolution has not been documented beyond a reasonable clinical doubt and whose continued activity may explain the chronic fatiguing illness. Examples may include previously treated malignancies and unresolved cases of hepatitis B or hepatitis C virus infection.
• Any past or current diagnosis of major depression with melancholic or psychotic features, bipolar affective disorder, schizophrenia of any subtype, delusional disorders of any subtype, dementias of any type, anorexia nervosa, or bulimia.
• Alcohol or other substance abuse within two years prior to the onset of the chronic fatigue and any time afterwards.
• Severe obesity as defined by a body mass index (weight in kilograms, height in meters) equal to or greater than 45.

• Any unexplained physical examination finding or laboratory or imaging test abnormality that strongly suggests the presence of an exclusionary condition. This must be resolved prior to further classifications.

To assist in assessing exclusionary conditions, a reasonable laboratory workup should be performed which includes:

• Urinalysis
• Complete blood count with differential
• Chemistry panel
• Thyroid function test (TSH may suffice)
• Erythrocyte sedimentation rate
• Alanine aminotransferase
• Total protein
• Albumin
• Globulin
• Alkaline phosphatase Calcium
• Phosphorus

• Glucose

     It is noteworthy to mention that the use of tests to diagnose CFS (rather than to exclude other diagnostic possibilities) should be done only in the setting of protocol-based research. You should fully inform the patient that such tests are investigational and do not aid in the diagnosis or management of CFS.

In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended for the specific purpose of diagnosing CFS, including:

• Serologic tests for Epstein-Barr virus, retroviruses, human herpesvirus 6, enteroviruses, and Candida albicans
• Tests of immunologic function, including cell population and function studies

• Imaging studies, including magnetic resonance imaging (MRI) scans and radionuclide scans (such as single-photon emission computed tomography and positron emission tomography - PET) of the head.

     Once these qualifications have been met, four patient problems of a possible eight must be present during the duration of the illness. In addition, they must be of a magnitude and duration to contribute to the illness. These complaints include pharyngitis, lymph node swelling, myalgia, arthralgia, headache, sleep problems, cognitive problems, and exercise-induced malaise.
     It is worthy too that once the fatigue and absence of previously unrecognizable illness criteria are met, this definition can be met by a variety of combination of the above eight problems. Patients frequently have more than four of the eight, and periodically have additional problems as well.
     CFS is not an easy diagnosis to make and it should not be made on the basis of a patient questionnaire. Patient complaints should be addressed by the physician as to when, where, and how the complaint impacts the patient's functioning. These qualifying issues are not specifically discussed in the research definition. They are alluded to by the requirement that procedures for gathering data need to be recorded. The evaluation of these issues is critical in the clinical application of the definition however. Premature diagnosis and treatment of CFS would prevent identification of an illness that could readily be treated, therefore unnecessarily contributing to morbidity of the illness in a given patient. Thus, management of CFS begins with proper identification.

When considering or giving a diagnosis of CFS to a patient, some principles in management should be followed:

• If the patient is new to you, obtain any previous medical records.
• Inquire about other physicians, health providers or health advisors being seen simultaneously.
• Build a partnership with the patient based on trust and open exchange.
• Acknowledge the importance of being the patient's advocate.
• Make sure you are fully informed of any medications the patient may be taking, including prescriptions, over-the-counter drugs, herbs, vitamins, minerals, food supplements, mail order products, etc.
• Don't over-medicate the patient keeping in mind the resulting problems of poly-pharmacy.
• Explore with the patient the possibility of interactions, side reactions, and adverse reactions of all medications, supplements, etc.
• Don't condone a patient's inappropriate self treatment.
• Maintain good medical records on the patient.
• Make sure you understand the patient's nutrition history thoroughly.
• Thoroughly explore the level of the patient's fatigue as well as the impact on the patient, especially if living alone.
• Identify the symptoms that are causing the patient the most distress and see that they are dealt with.
• When appropriate, use a medical team approach to treating the patient by defining the specialists whose expertise could possibly benefit the patient's well-being.
• Openly discuss the benefits of slowing the pace of their life with the patient. Guide them in how to avoid or reduce their exposure to physically or psychologically stressful situations.
• Make sure you understand the patient's pain tolerance — do not under-medicate or under-treat pain.
• Treatment with aspirin, other non-steroidal anti-inflammatory drugs or acetaminophen may be beneficial in reducing muscle and joint pains, headaches or feverish feelings.
• Address problems of unrefreshing sleep, problems falling asleep or maintaining sleep. Low doses of antidepressants have been reported to be beneficial. Consideration should be given for sleep abnormalities to see if a sleep study might be warranted. An assessment of the patient's pre-bedtime habits might provide clues of changes to consider, i.e., caffeine consumption, stimulants, etc.
• Assess anxiety and panic disorders which can occur in CFS patients and consider treatment with psychoactive agents which have been anecdotally reported to be beneficial. Additionally, secondary psychological problems should be openly considered and treated.
• Consider counseling, when appropriate, to help both the patient and their support team (family and close friends) adjust to the uncertain course of CFS and its resultant effects on roles and relationships.
• Assist the patient in identifying the problems that interfere most with their functioning. Special consideration should be given to the patient's energy level and a program designed to reflect any limitations. Referral to an occupational therapist could assist the patient in designing a program to conserve energy. If appropriate, a vocational therapist might be beneficial in helping the patient improve their functional capacity. A graduated exercise program, to tolerance only, may or may not be beneficial for the patient. The goal is to limit deconditioning while teaching the patient to be active without exacerbating symptoms.
• Explain in detail any medications given to the patient.
• Explore with the patient the limits of their capabilities.
• Assist the patient in setting realistic goals and expectations accounting for fluctuations in energy and symptoms.
• Encourage the patient to keep a home health diary documenting symptoms.
• Inquire about support for the patient by immediate family, relatives, friends, community, church, etc.
• At an appropriate time, explore in depth the physical and mental challenges of the patient's employment.
• Consider tape recording your sessions with the patient to assist those with impaired memory or cognitive problems. This will allow the patient to have accurate recall of the office visit rather than sporadic recall.
• Encourage the patient to bring someone with them to the office visit to assist them especially on days they experience extreme fatigue, cognitive or memory problems and to assure they get to and from the office visit safely.
• Schedule regular follow-up visits, usually every six months, or whenever the patient experiences disconcerting signs or symptoms.
• Dispel misinformation about CFS by maintaining an aggressive patient education program.
• Request the patient bring new information to you about CFS.
• Be impeccably honest with the patient.
• Don't be afraid to say, "I don't know."
• Be a good listener as well as a good communicator.
• Inquire about patient's resources of information on CFS.
• Maintain an active CME program for CFS.
• Set up a communication technique to receive ongoing material from reliable sources such as the National Institutes of Health, Centers for Disease Control and Prevention, etc.
• Develop a medical consult you are comfortable with at your alma mater or the nearest medical school with whom you can talk to about CFS.

• Consider visiting a patient support group in your community.

     Your thoroughness is mandatory from the very beginning in the diagnostic process to make sure that you have not overlooked another source of the patient's fatigue. Keep in mind that CFS may not be an endpoint diagnosis and continue to be on the lookout for other medical problems and avoid assuming that every new sign or symptom is a manifestation of CFS. Chronic Fatigue Syndrome will test your ability as a physician, diagnostician, sympathetic and compassionate healthcare provider.

References:

1. Chronic Fatigue Syndrome — Information for Physicians, NIAID/NIH, Bethesda, MD, September 1996
2. K Fukuda et al. The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study. Annals of Internal Medicine 121:953-9 (1994)
3. K Fukuda and NM Gantz. Management Strategies for Chronic Fatigue Syndrome. Federal Practitioner 12:12-7 (1995)

4. The Facts About Chronic Fatigue Syndrome. CDC. Atlanta, GA, March 1995