Understanding long-term outcomes of chronic fatigue syndrome.

Chronic fatigue syndrome (CFS) is a chronic and disabling condition that remains poorly understood. Although an array of aberrant biological systems is implicated in CFS (Kerr et al., 2008; Klimas & O’Brien Koneru, 2007), the precise etiology is currently unclear. Given the dearth of effective treatments available, the prognosis of CFS tends to be poor. In a review of longitudinal CFS studies, Joyce, Hotopf, and Wessely (1997) found that fewer than 10% of adult participants across studies reported returning to premorbid functioning. A more recent review found a median CFS recovery rate of 5%, although there was variability in recovery rates across studies (Cairns & Hotopf, 2005). Based on these findings, it is apparent that although many patients do have some improvement in functioning over time (Cairns & Hotopf, 2005), the vast majority of individuals who develop CFS do not attain a premorbid level of functioning. Despite efforts to understand the natural history of CFS, and some evidence suggesting longer-term follow-up is associated with better illness outcomes (Joyce et al., 1997), few studies have implemented follow-up periods longer than three years. In a 10-year follow-up of 24 patients with CFS, Jason, Porter, et al. (2011) found that 67% maintained a diagnosis of CFS. The authors also found that only one participant out of the original 24 with CFS was considered to be in remission (i.e., did not have six or more months of fatigue) at follow-up. With regard to age, findings from Joyce et al.’s (1997) review indicated that older age predicted poorer CFS prognosis in the majority of studies testing this relationship, suggesting the possibility of a better prognosis for children and adolescents who develop the illness. When examining studies specific to young patients suffering from chronic fatigue, they found a recovery rate of at least 54%, depending on sample characteristics and duration of follow-up (Joyce et al., 1997). Yet, in a 13-year follow-up of 35 youths who developed illness suggestive of CFS between 1984 and 1987, Bell, Jordan, and Robinson (2001) found that only 37% reported complete recovery, and 20% remained very ill and disabled. Therefore, even among younger patients and extensive follow-up periods, the majority of patients remain disabled. Individuals with CFS who have been ill for longer periods of time may utilize more adaptive coping skills (Brown, Brown, & Jason, 2010), thus facilitating the process of illness adaptation (Samson & Siam, 2008). However, illness adaptation may create difficulty in interpreting the meaning of recovery from CFS. For example, in Bell et al.’s (2001) study, 80% of the children and adolescents who became ill considered themselves “well” at follow-up. However, of those 80%, half had ongoing somatic symptoms, while the other half had minimal or no somatic symptoms. Some patients may perceive themselves as feeling well if their symptoms continue but perhaps not as severely as when their illness began. In a study of 10 individuals who were diagnosed with CFS 25 years ago but currently reported being recovered or nearly recovered, Bell and Bell (2010) found that they reported more impairment compared to healthy controls. Although these findings are preliminary, they demonstrate that while some people feel they have recovered from the illness overall, they continue to remain symptomatic years later. In the course of clinical treatment and primary care, patients often report that they have “recovered” or “nearly recovered” (Bell & Bell, 2010). However, it is likely that they continue to experience symptoms suggestive of CFS. The present study sought to assess the function of individuals who were diagnosed with CFS as adolescents approximately 25 years ago in order to explore the extent of recovery from CFS.