Chronic fatigue syndrome in the emergency department

Abstract

Purpose: Chronic fatigue syndrome (CFS) is a debilitating disease characterized by fatigue, postexertional malaise, cognitive dysfunction, sleep disturbances, and widespread pain. A pilot, online survey was used to determine the common presentations of CFS patients in the emergency department (ED) and attitudes about their encounters.

Methods: The anonymous survey was created to score the severity of core CFS symptoms, reasons for going to the ED, and Likert scales to grade attitudes and impressions of care. Open text fields were qualitatively categorized to determine common themes about encounters.

Results: Fifty-nine percent of respondents with physician-diagnosed CFS (total n=282) had gone to an ED. One-third of ED presentations were consistent with orthostatic intolerance; 42% of participants were dismissed as having psychosomatic complaints. ED staff were not knowledgeable about CFS. Encounters were unfavorable (3.6 on 10-point scale). The remaining 41% of subjects did not go to ED, stating nothing could be done or they would not be taken seriously. CFS subjects can be identified by a CFS questionnaire and the prolonged presence (>6 months) of unremitting fatigue, cognitive, sleep, and postexertional malaise problems.

Conclusion: This is the first investigation of the presentation of CFS in the ED and indicates the importance of orthostatic intolerance as the most frequent acute cause for a visit. The self-report CFS questionnaire may be useful as a screening instrument in the ED. Education of ED staff about modern concepts of CFS is necessary to improve patient and staff satisfaction. Guidance is provided for the diagnosis and treatment of CFS in these challenging encounters.

Keywords: SEID; myalgic encephalomyelitis; orthostatic intolerance; patient satisfaction; postexertional malaise; systemic exertion intolerance disease.

Figure 1

CFS severity scores for subjects who had visited an ED (black bars, Yes_ED) and those who had never been to an ED (white bars, No_ED) (mean ±95% CI). Abbreviations: CFS, chronic fatigue syndrome; ED, emergency department; No_ED, did not go to an ED because of symptoms they believed were related to CFS; Yes_ED, did go to an ED because of symptoms they believed were related to CFS.

Figure 2

Frequency analysis of Sum8. Severity scores for the eight ancillary CFS criteria were added together (Sum8). Notes: Survey respondents (ED, black circles and line) had moderate and severe fatigue and high Sum8 scores. The moderate and severe fatigue group included CFS and chronic idiopathic fatigue patients (squares, gray line). The group representative of the US population (triangles, black line) included CFS-like with insufficient fatigue syndrome (low fatigue scores, Sum8 ≥14) and subjects with depression and other exclusionary conditions. A second group with low fatigue scores after exclusionary conditions were removed had lower Sum8 scores (diamonds, gray line). Abbreviations: CFS, chronic fatigue syndrome; ED, Emergency Department.

Figure 3

Percentage of responses. Scores were equivalent for the Yes_ED (black bars) and No_ED (white bars) groups. y-axes =% of group. Abbreviations: ED, emergency department; No_ED, did not go to an ED because of symptoms they believed were related to CFS; Yes_ED, did go to an ED because of symptoms they believed were related to CFS.

Figure 4

Frequencies of individual free text symptoms at presentation to the emergency department.

Figure 5

ED ratings and CFS patient expectations. Notes: The ordinal scale was scored with 0 = “completely disagree” and 10 = “completely agree.” Abbreviation: CFS, chronic fatigue syndrome; ED, emergency department.

Figure 6

Free text themes. Percentages of subjects responding to each theme were plotted for Yes_ED (black bars) and No_ED (white bars) groups. Abbreviation: CFS, chronic fatigue syndrome; ED, emergency department; ME, myalgic encephalomyelitis; No_ED, did not go to an ED because of symptoms they believed were related to CFS; Yes_ED, did go to an ED because of symptoms they believed were related to CFS.