Chronic fatigue syndrome (CFS) is a long-term, often misunderstood disorder that affects multiple body systems. It's also referred to as myalgic encephalomyelitis or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic fatigue immunity deficiency syndrome, systemic exertion intolerance disease, and postviral fatigue syndrome.1-4 CFS affects more women than men and is more likely to occur in middle age, although it can happen at any age, including childhood.1-4 According to the CDC, an estimated 836,000 to 2.5 million Americans experience CFS, but most haven't been diagnosed.3
This article describes the pathophysiology, signs and symptoms, diagnostic criteria, and nursing considerations for adult patients with CFS.
Although not well understood, the pathophysiology of CFS involves the nervous, immune, metabolic, endocrine, and digestive systems.5,6 Studies have shown a dysregulation of several limbic-hypothalamic-pituitary-adrenal axes that affect levels of certain hormones such as cortisol. Spots in the brain's white matter, neuroinflammation, and increased levels of lactate have also been documented.5 Orthostatic hypotension and tachycardia are common, indicating autonomic nervous system involvement. However, even when BP and heart rate are normal, a significant decrease in cerebral blood flow has been seen.5
Immune system changes involve abnormal functioning of white blood cells and an increased number of cytokines.7 Metabolic studies show a decrease in the ability to produce or use energy on the cellular level.6 In healthy people, exercise typically makes energy metabolism more efficient. The opposite is true in CFS. Digestive pathophysiology includes abnormalities of the gut microbiome and gut inflammation.5
Some researchers have proposed that the triggering of one final common pathway leads to the cascade of abnormalities. That trigger may be inflammation, but this has yet to be determined.8
Debilitating fatigue and other symptoms
The hallmark of CFS is debilitating fatigue that doesn't improve with rest and can't be explained by an underlying medical disorder.4 In some cases, the onset of CFS is acute following an infection such as Epstein-Barr virus, trauma such as a motor vehicle crash, or surgery.9 But in some patients, symptoms develop gradually over months or years.10 Because the disorder is complex, symptoms are nonspecific and many healthcare professionals aren't well educated about it. Consequently, CFS is often overlooked or misdiagnosed.3
In CFS, fatigue may be severe enough to prevent the patient from conducting normal daily activities or even getting out of bed. At least 25% of patients are house- or bedbound at some point during their illness. About 50% of those affected by CFS are able to return to work, either full- or part-time.7
A characteristic of the fatigue associated with CFS is that it may flare up after even light physical, emotional, or cognitive effort—a phenomenon called postexertional malaise (PEM). Often described by patients as a “crash,” PEM may be triggered by something as simple as taking a shower or doing laundry. Patients may be house- or bedbound during an episode of PEM and not recover for weeks or more.3,4
The fatigue of CFS isn't relieved by sleep due to disturbances in sleep rhythm or quantity. Consequently, many patients experience nighttime insomnia and daytime hypersomnia.11 Other common signs and symptoms include orthostatic intolerance (a drop in BP or an increase in heart rate upon standing); cognitive impairment; light, sound, food, or chemical sensitivities; pharyngitis; arthralgia; tender lymph nodes; and headaches.4 Comorbidities, such as fibromyalgia, Sjögren syndrome, postural tachycardia syndrome, and allergies, may also be present.1,11,12 The severity of signs and symptoms varies among individuals and often fluctuates throughout the day or even over the course of months or years.
Like patients with other chronic illnesses, patients with CFS may experience depression and anxiety as they deal with a chronic disease. However, it's important to note that CFS is a biologic, not a psychologic, illness.9
CFS definitions have varied over the years. In 2015, the Institute of Medicine (now the National Academy of Medicine) proposed the following diagnostic criteria accompanied by cognitive impairment and/or orthostatic intolerance:13,14
- a substantial reduction or impairment in the ability to engage in preillness levels of activity that lasts for more than 6 months with profound, new-onset fatigue that isn't the result of ongoing or unusual exertion and not substantially alleviated by rest
- unrefreshing sleep.
Clinicians must run standard diagnostic studies to rule out thyroid disorders, adrenal insufficiency, multiple sclerosis (MS), and other diseases.7 However, standard lab tests are often normal and patients are frequently told that nothing is wrong.5 Diagnosis is based on the patient's signs and symptoms and the exclusion of other disorders.1,7
Although there's currently no approved diagnostic biomarker for CFS, an investigational blood test was recently proven reliable in an initial study.15 After cells from healthy individuals and CFS patients were stressed with a salt, investigators measured their responses. They found a clear difference in the way CFS cells reacted compared with healthy cells and attained 100% accuracy in identifying CFS cells using this nanoelectronic assay test. Researchers are working on studying the test in a larger cohort.15
To date, no treatments for CFS have been proven effective in large randomized trials.1 Graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were once recommended. However, in 2017 the CDC and the Agency for Healthcare Research and Quality removed GET and CBT as recommended interventions. Antiviral drugs, antibiotics, and vitamins have been shown to be ineffective.7
Some studies of patients treated with hydrocortisone have shown positive short-term results.11 Pharmacotherapy with drugs such as dextroamphetamine, nefazodone, acetyl-l-carnitine, rintatolimod, and immunoglobulin produced some improvements, but these medications didn't have the epidemiologic significance to become the gold standard for treatment.11
The main goal of treatment is helping patients improve their quality of life through symptom relief.2 Sleep disruption and pain are usually addressed first and may require a sleep or pain specialist. Epsom salt soaks, acupuncture, massage, yoga, and activity management are nonpharmacologic therapies that may be recommended.1,4
Patients should be encouraged to be as active as their energy allows, but they must follow activity with adequate rest to avoid relapses. It's important to note that what works for one patient with CFS may not work for another.
Nurses caring for patients with CFS should keep these points in mind:
- Patients may need additional assistance with activities of daily living and take more time to recover from surgery and other medical procedures, as well as any kind of emotional or mental stress.
- Monitor patients for orthostatic intolerance and intervene appropriately; for example, by including standby assist with ambulation in the nursing care plan.
- Given the lack of standardized conventional treatments, patients may use alternative practitioners and therapies. During medication reconciliation, specifically inquire about vitamins and other supplements to avoid potential interactions with prescribed medications.
- Remember that many patients with CFS don't look sick and have no outward sign of illness.16 This doesn't mean they aren't experiencing symptoms. In severe cases, patients may be more functionally impaired than those with heart failure, MS, or end-stage renal disease.4
Dr. Elizabeth Unger, the chief of the CDC's Chronic Viral Diseases Branch that includes the CFS program, says the predominant concern she hears from patients and their families is the difficulty finding informed and compassionate healthcare providers.2 CFS is rarely covered in medical or nursing school courses.1,3 Despite the disabling nature of the disease, many patients have been dismissed by healthcare providers.9 It's important for nurses to be advocates for patients with CFS by acknowledging the significant and ongoing impact that the disease has on their lives and validating their experience and concerns. Both patients and healthcare providers can benefit by reviewing the CDC website and other resources. (See For more information.)
Hope for the future
CFS research initially lagged due to misunderstanding surrounding the disease.17 However, the National Institutes of Health has increased its research efforts in recent years.5 Soon, we may have a readily available biomarker, a better understanding of the pathophysiology of CFS, and a proven treatment. For now, healthcare professionals can support patients by educating themselves about CFS and recognizing the negative effects of this disease.
For more information
- American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
- Emerge Australia
- Solve ME/CFS Initiative
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1. Unger ER, Lin J-MS, Brimmer DJ, et al. CDC grand rounds: chronic fatigue syndrome—advancing research and clinical education. MMWR Morb Mortal Wkly Rep
2. Unger E. Chronic fatigue syndrome: it's real, and we can do better. Medscape. 2019. www.medscape.com/viewarticle/908622
3. Centers for Disease Control and Prevention. What is ME/CFS? 2018. www.cdc.gov/me-cfs/about/index.html
4. Solve ME/CFS Initiative. What is ME/CFS? About the disease. 2019. www.solvecfs.org/about-the-disease
5. Komaroff AL. Advances in understanding the pathophysiology of chronic fatigue syndrome. JAMA
. [e-pub July 5, 2019]
6. McGregor NR, Armstrong CW, Lewis DP, Gooley PR. Post-exertional malaise is associated with hypermetabolism, hypoacetylation and purine metabolism deregulation in ME/CFS cases. Diagnostics (Basel)
7. Roberts J, Bronze M. Chronic fatigue syndrome (CFS). Medscape. 2018. https://emedicine.medscape.com/article/235980-overview
8. Goldstone H, Partan E. Thousands of studies paint new picture of chronic fatigue syndrome. WCAI. 2019. www.capeandislands.org/post/thousands-studies-paint-new-picture-chronic-fatigue-syndrome#stream/0
9. Centers for Disease Control and Prevention. Myalgic encephalomyelitis/chronic fatigue syndrome. Etiology and pathophysiology. 2018. www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/etiology-pathophysiology.html
10. Centers for Disease Control and Prevention. Myalgic encephalomyelitis/chronic fatigue syndrome. Presentation and clinical course of ME/CFS. 2018. www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html
11. Cortes Rivera M, Mastronardi C, Silva-Aldana CT, Arcos-Burgos M, Lidbury BA. Myalgic encephalomyelitis/chronic fatigue syndrome: a comprehensive review. Diagnostics (Basel)
12. Kaufmann H, Freeman R. Postural tachycardia syndrome. UpToDate. 2015. www.uptodate.com
13. Institute of Medicine of the National Academies. Proposed diagnostic criteria for ME/CFS. 2015. www.nap.edu/resource/19012/MECFS_ProposedDiagnosticCriteria.jpg
14. Centers for Disease Control and Prevention. Myalgic encephalomyelitis/chronic fatigue syndrome. 2015 IOM diagnostic criteria. www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html
16. Solve ME/CFS Initiative. 5 Myths of ME/CFS. 2018. https://solvecfs.org/5-myths-of-me-cfs
17. Wanner M. Solving the mystery of chronic fatigue syndrome. The Jackson Laboratory. 2019. www.jax.org/news-and-insights/2019/february/solving-the-mystery-of-chronic-fatigue-syndrome