CDC Grand Rounds

Chronic Fatigue Syndrome — Advancing Research and Clinical Education

Elizabeth R. Unger, PhD, MD; Jin-Mann Sally Lin, PhD; Dana J. Brimmer, PhD; Charles W. Lapp, MD; Anthony L. Komaroff, MD; Avindra Nath, MD; Susan Laird, MSN; John Iskander, MD

Disclosures

Morbidity and Mortality Weekly Report. 2016;65(5051):1434-1438.

ME/CFS Is a Significant Public Health Problem

Extrapolating from the three U.S. population-based studies, it is estimated that at least one million persons in the United States suffer from ME/CFS.^[4–6] These studies indicate that ME/CFS is three to four times more common in women than in men. Persons of all racial and ethnic backgrounds are affected; however, the illness is more prevalent in minority and socioeconomically disadvantaged groups. The highest prevalence of illness is in persons aged 40–50 years, but the age range is broad and includes children and adolescents.

ME/CFS patients, their families, and society all bear significant costs associated with this illness. These include direct medical costs for provider visits and medications and indirect costs of lost productivity. In the United States, the estimated annual cost of lost productivity ranges from 9–37 billion dollars, and for direct medical costs, ranges from 9–14 billion dollars, with nearly one quarter of direct medical expenses paid directly by patients and their families.^[7–9] When ME/CFS occurs in patients aged <25 years, these patients might not achieve their full educational potential, resulting in a life-long impact on their earnings.^[7]

ME/CFS patients have significant functional impairment as illustrated by findings from CDC's ongoing study of patients in seven clinics of ME/CFS specialists (Figure). Functioning of ME/CFS patients, as measured by subscale scores on the 36-Item Short Form Survey (SF-36), were well below those of healthy persons except for the two subscales reflecting mental and emotional functioning. Despite the severity of their illness, ME/CFS patients face significant barriers to receiving appropriate health care. A population-based study in Georgia found that 55% of persons with ME/CFS reported at least one barrier to health care; for example, 10% had financial barriers to seeking needed health care.^[10] Most persons with ME/CFS identified in population surveys have been ill >5 years and only approximately half continue to seek medical care.^[4–6] Further, only approximately 20% received a diagnosis, emphasizing the need for more physician education about this illness.

(Enlarge Image)

Figure.

Functional status* of 471 patients enrolled in CDC's Multisite Clinical Assessment^† of ME/CFS^§ — United States, September 2015
Abbreviations: CFS = chronic fatigue syndrome; ME = myalgic encephalomyelitis; SF-36 = short form 36.
*Measured by box plots of scores in the eight subscales of SF-36 scores (25th and 75th percentile at bottom and top of box). SF-36 scores range from 0–100, with higher scores indicating better functioning.
^†https://www.cdc.gov/cfs/programs/clinical-assessment/index.html.
^§ME/CFS patients show significant impairment, particularly in vitality and physical functioning subscale scores, but with preservation of mental health and emotional role functioning.

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Abstract and Introduction
ME/CFS Is a Significant Public Health Problem
Clinical Approach to ME/CFS
Cause or Causes of ME/CFS
Treatment of ME/CFS
Addressing ME/CFS
References

Box 1. Myalgic encephalomyelitis/chronic fatigue syndrome case history
The patient, aged 37 years, was an internet technologist for a community bank. She had been physically active in sports and working out, and had been maintaining her own household when she experienced a flu-like illness in 2011. She was bedbound at first and slow to recover. Within days she noted an unusual fatigue after minimal activity, then insomnia, achiness in the joints, and generalized muscle pain and weakness. She soon found it difficult to recall recent conversations and events. Reading concentration was limited, and she had trouble comprehending what she had read or even television shows. She would search for words, lose her train of thought, and friends would sometimes have to finish sentences for her. Previously her sleep had always been good, but now she was restless at night and would awaken unrefreshed even after many hours of bed rest. She felt stiff, sore, and foggy for 1–2 hours after awakening. She noted dizziness or lightheadedness on getting up quickly, and on a couple of occasions "saw stars," but did not experience tunnel vision or fainting. The patient was unable to keep up the house, and she had to rely on friends and family to help her with cleaning, laundry, and shopping. She would attempt to keep up at home and at work, but exertion would inevitably make symptoms worse, and if she exerted too much she would end up sick and chairbound for 1–2 days afterward. Evaluation by her primary care physician revealed low blood pressure, but there was no immediate orthostatic blood pressure drop and otherwise the examination was unremarkable. Blood work was unremarkable. Having no explanation for her symptoms despite the profound reduction in her physical abilities, the patient became anxious about her future and both frustrated and discouraged.

Box 2. Institute of Medicine criteria for diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome
Patient has each of the following three symptoms at least half of the time, to at least a moderately severe degree: A substantial reduction or impairment in the ability to engage in preillness levels of occupational, educational, social, or personal activities that persists for >6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest. Postexertional malaise* Unrefreshing sleep* Plus at least one of the two following manifestations (chronic, severe): Cognitive impairment* Orthostatic intolerance
Source: Institute of Medicine. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. Washington, D.C.: The National Academies Press; 2015. https://www.nationalacademies.org/hmd/reports/2015/me-cfs.aspx *Frequency and severity of symptoms should be assessed. The diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.