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Curriculum expands awareness - CFS: Primary Care Basics

Chronic fatigue syndrome (CFS) remains a poorly understood and underdiagnosed disease. Prevalence is estimated at 422/100,000; it is believed that more than 855,000 adults in the United States have CFS. Yet research shows that 84-90 percent of people who meet the 1994 International Research Case Definition for CFS (see back page) remain undiagnosed.1

To help improve awareness, diagnosis and treatment of CFS, The CFIDS Association of America and the Illinois Area Health Education Centers Program have partnered with federal agencies to create an education curriculum for primary care providers. The curriculum, which was developed by national CFS experts, is now being offered for Continuing Education (CE) credit. It is designed both as an introduction to the disease and a treatment update for practitioners who already see CFS patients. For more information, please contact Terri Lupton, Coordinator for Educational Opportunities at the CFIDS Association.

The following treatment overview is adapted from the new curriculum:

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Symptomatic treatment
People with CFS present with a wide variety of primary symptoms. Providers should query patients about which symptoms are of greatest concern to them and tailor the management plan accordingly. Many CFS patients are extremely sensitive to medicines; providers are advised to start with very low doses and increase gradually to tolerance level. Therapeutic benefits may be achieved at lower than normal dosages.

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Sleep Disturbances. Most people with CFS report sleep disturbances. Disrupted sleep leads to increased fatigue, irritability and muscle pain. Typical sleep disorders include difficulty falling asleep, hypersomnia, frequent awakening, intense and vivid dreaming, restless legs, periodic leg movements and nocturnal myoclonus. Most patients experience non-restorative sleep, a feeling of profound fatigue, achiness and mental "fogginess" that lasts 1-2 hours after rising.

Treatment is dependent on identification of the underlying sleep disturbance and should be tailored to the patient with consultation by sleep specialists. Simple sleep hygiene measures can be suggested, and include:

  • Avoiding daytime naps;
  • Scheduling brief exercise periods for late afternoon or early evening;
  • Establishing a regular bedtime routine and waking time.

Pharmacologically, primary health care providers may wish to consider simple antihistamines (like diphenhydramine) or over-the-counter sleep products as initial therapy. Some physicians who specialize in the treatment of CFS have found that clonazepam (0.5-1mg hs) to initiate sleep and low dose tricyclic or tetracyclic antidepressants to help maintain sleep have been useful for patients who have trouble both falling asleep and staying asleep. Examples are doxepin (10-25mg), amitriptyline (10-25mg) or trazodone (50mg). The hypnotic drug zolpidem (Ambien®) has been helpful for both sleep initiation and maintenance in some patients with CFS. Zolpidem increases the depth of sleep (stages 3 and 4). Note that users may adapt to the drug over time.

Benzodiazepines can be helpful, but are associated with unfavorable characteristics such as habituation, adaptation and adverse effects on stages 3 and 4 sleep. A word of caution, as noted above: persons with CFS often do not tolerate usual dosages of sedating medications. It is best to start with low doses and increase as needed and tolerated.

Analgesics and/or non-steroidal anti-inflammatory drugs (NSAIDs) can be used for relief of musculoskeletal pain or headache, and often benefit sleep as well. Other medications to achieve improved sleep may be needed, and if sleep problems persist, it is advisable that formal sleep studies and/or referral to a sleep specialist be arranged.

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Pain. CFS pain may be in muscles (sometimes described as "deep pain") or joints (arthralgias). Patients may also complain of headaches (typically pressure-like), and allodynia, which is generalized hyperalgesia or soreness of the skin to touch.

It is advisable to avoid narcotics whenever possible; therapy should begin with simple analgesics like acetaminophen, aspirin or NSAIDs. Low doses of tricyclic antidepressants can also be helpful in tempering muscle pain. A mild narcotic like propoxyphene, or tramadol (Ultram®), which may be less habituating and has the advantage of increasing serotonin as well, may be considered for persistent pain.

For persons with severe and chronic pain, long-acting narcotics (e.g., MS Contin®, Oramorph® or fentanyl patches) have been effective in certain cases. Persons with severe chronic pain should be advised to seek counseling on adjunctive pain management techniques such as meditation, deep breathing, biofeedback, gentle massage, physical therapy, etc. Short-acting narcotics should be avoided (e.g., codeine, Demerol, Percocet) except in consultation with specialists.

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Central activation. Studies suggest that CFS is associated with decreased levels of the neurotransmitters serotonin and dopamine. This leads to disrupted sleep, lowering of the pain threshold, irritability and depressed mood. Low doses of serotonin re-uptake inhibitors or dopamine agonists may be used. Some patients have experienced decreased fatigue and improved cognition by using low doses of amphetamine-based stimulants (Dexedrine, methylphenidate, phentermine). However, as with many treatments in CFS, there have not been adequate controlled studies of these medications and some controversy exists. Stimulants should be used only with the advice of a psychiatrist or sleep expert who also follows the patient.

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Depression. CFS is not a form of depression. But as a result of the loss of functional abilities and changes in brain chemistry, depression is a common symptom in persons with CFS and should be treated when diagnosed. Providers must choose carefully when prescribing antidepressants; these drugs include a variety of agents, each of which targets various symptoms (e.g., those that target sleep disturbances include amitriptyline and nefazodone).

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Dysautonomias. Orthostatic intolerance, the inability to maintain upright posture, is common in people with CFS. Types of orthostatic intolerance seen in CFS include neurally mediated hypotension (NMH), postural orthostatic tachycardic syndrome (POTS) and vasovagal syncope.

Orthostatic intolerance can be confirmed by tilt table testing, which is available at most medical centers and should be performed in a hospital setting only. This condition responds well to volume expansion and adrenergic blockage in patients without CFS, but has been less effective in CFS patients with abnormal tilt table responses. Usual therapy for diagnosed orthostatic intolerance is increased fluid intake (64 oz. water per day) and dietary salt (typically 2-6 additional grams daily), and the use of compression garments. Fludrocortisone, midodrine (ProAmatine), beta-blockers and alpha agonists are medication therapies that can be attempted if these simplistic measures don't provide adequate symptom benefits.

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Supportive treatment
The clear goal of any management plan is to optimize health. Addressing patients' individual needs through supportive therapies will assist in optimizing function.

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Diet. A prudent, well-balanced diet is the foundation of good health. Some people with CFS report varying degrees of intolerance to refined sugar, caffeine, alcohol and tobacco, all of which should be minimized to promote optimum health.

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Activity. CFS symptoms tend to worsen with physical and/or mental activity, and a prolonged relapse can be triggered by overexertion. CFS patients are best advised to balance gentle activity with frequent rest periods.

Discourage excess rest and social withdrawal. Recommended activities include stretching, light calisthenics, light weights (1-2 pounds), walking, bicycling or swimming. Most patients will have to start with two- or three-minute periods of exercise, interspersed with frequent rest periods. The exercise should not make the individual tired. Careful planning of duration and distance allows the patient to stop the activity before becoming tired. The exercise duration is then increased very slowly over time, but may have to be reduced or withheld temporarily during periods of relapse.

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Counseling. A supportive counselor can help patients cope with the prospects of long-term illness, as well as family issues, anxiety, depression, grief, anger and guilt. Cognitive behavioral therapists are specifically trained to provide both the guidance and the support that is helpful in CFS and other chronic illnesses, focusing on realistic goals, symptom management and strengthening coping mechanisms. However, cognitive behavior therapy is not a cure for CFS.

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Debate still surrounds the prognosis of CFS, and unfortunately there is insufficient data to accurately predict long-term outcomes. Based on the limited research available, it appears that the majority of patients with CFS improve within five years of becoming ill. Improvements may be due to lessening of the severity of symptoms, adjustments in lifestyle and/or compensatory behaviors. Even those patients who report recovery indicate that some symptoms continue, albeit at a lower and less debilitating level.

Based on statistical data from the U.S. Centers for Disease Control and Prevention (CDC), if symptoms last for five years it is unlikely that the illness will improve significantly in subsequent years. However, improvement is possible in any individual patient at any point in the course of the illness.

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CFS is a complex illness with a myriad of symptoms that are common to other diseases. Nevertheless, the process of sorting through symptoms and assessing abnormalities (by a thorough history and physical) is no different than clinical assessment of other illnesses. Like other illnesses, CFS symptoms form a specific pattern that, when combined with exclusionary laboratory tests, are diagnostic.

The challenge of diagnosing and managing CFS remains a formidable task today, but the future is promising. Rigorous research is being conducted into its causes and treatment, and a recent initiative by the CDC has provided necessary support for further research and education of primary health care providers. These efforts, combined with a growing grassroots patient advocacy movement, provide hope for new breakthroughs in diagnosis and management of CFS.

1 Jason LA. "A community-based study of CFS." Archives of Internal Medicine. 159:2129-2136.

Adapted from "Chronic Fatigue Syndrome: A Diagnostic & Management Challenge." For more information, contact The CFIDS Association of America at 704-365-2343.

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CFS and disability: the doctor's role

By definition, all patients with CFS are debilitated and many are disabled. Most patients worked full time before becoming ill. Studies show a substantially decreased number are able to maintain full-time employment after the onset of CFS.

The application process for disability benefits is often protracted and frustrating, and career-oriented individuals have difficulty accepting that they may have to discontinue working and rely upon insurance companies and the government for financial support. When a patient applies for disability benefits, treating professionals are a major source of pertinent information.

The process of preparing letters or reports or filling out forms can be time consuming, but may be streamlined by maintaining adequate documentation, keeping detailed office notes and following an outline. Documentation should be as complete and specific as possible.

Ongoing evaluation tools can supply useful data. The Hospital Anxiety and Depression Scale (HADS), the Fisk Fatigue Impact Scale, the SF-36, a patient-completed symptom checklist and the Subjective Functional Capacity Assessment Tool are helpful in supplying documentation and providing information for a report or letter. The assessment tool was created by Charles Lapp, MD, and is available through The CFIDS Association of America.

Bell's Disability Scale can be completed on the basis of your observations along with patient input. This scale puts a "number" on the individual's degree of disability. It is preferable to the Karnofsky scale, which is not particularly useful in CFS. When cognition is significantly impaired, referral to a neuropsychologist for testing often yields supportive data. Additional information on helping patients win disability claims is available at www.cfids.org.

The CFIDS Association of America, Inc.
PO Box 220398
Charlotte, NC 28222-0398

Copyright © 2002, The CFIDS Association of America, Inc.

Posted with permission from The CFIDS Association of America.

This article was originally posted at www.cfids.org/archives/2002rr/2002-rr1-article01.asp

[Note: As of 2014, The CFIDS Association of America changed its name and website to Solve ME/CFS Initiative - https://solvecfs.org.]

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