Onset Patterns of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: A Mixed Method Approach

Chronic fatigue syndrome (CFS), Myalgic Encephalomyelitis (ME) and Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) refer to a debilitating illness without a universally accepted or well-understood etiology. Some experts have suggested that there are multiple pathways to the development of ME and CFS, which may also indicate multiple onset patterns. Due to unanswered questions regarding etiology, the onset of ME and CFS is considered a key area of inquiry. Case criteria for ME and CFS and much of the academic literature suggest that patients typically experience one of two possible onset patterns: sudden or gradual. Many experts consider the mode of ME and CFS onset an important factor for differentiating patients on key dimensions including etiology, health status, prognosis, and psychiatric comorbidity. Previous literature has suggested a link between sudden ME and CFS onset and a viral/infectious etiology, lower psychopathology, and worse health outcomes. However, other studies have found opposite or inconclusive findings. In order to replicate and build on previous research, the current study is an investigation of whether mode of onset differentiates individuals with ME and CFS on etiology, psychopathology, and daily functioning. It was hypothesized that individuals with sudden onsets would more likely report that a virus/infection preceded their illness, attribute their illness to physical causes, evidence lower lifetime psychiatric comorbidity, report poorer physical functioning, and have better mental health outcomes compared to the gradual onset group. Hypotheses were tested using multivariate analyses of variance (MANOVA) and the Pearson’s chi-squared test of independence. Results revealed that mode of illness onsetdid not differentiate individuals on key factors related to etiology, psychopathology, and prognosis. The lack of a universal definition for mode of illness onset is likely contributing to the inconsistencies in the percentage of sudden versus gradual ME and CFS onsets reported in the literature. Given the ambiguous etiology, complex symptom profile, and heterogeneous onset patterns associated with ME and CFS, it would be useful to better define onset. An in-depth investigation of ME and CFS onset can provide insight into early symptoms, onset duration, and the progression of functional disability. Few studies have utilized qualitative inquiry to understand the patient’s perspective of onset. Based on previous research documenting the rich information that can be gained from personal illness narratives, the second phase of the study involved phone interviews with individuals with ME and CFS. A qualitative descriptive approach was used to gain rich descriptions of illness onset from the patients’ point of view. Overall, qualitative findings revealed detailed descriptions of ME and CFS onset experiences. Major themes that emerged from the data included: onset/illness progression patterns, illness causes, methods of adapting and coping, hardworking and active lives prior to onset, healthy lives prior to onset, prior health problems, comorbid health conditions, emotional responses to onset, exertional effects, the illness as life limiting, stress, traumatic experiences, lack of support, support, and treatment limitations. A closer examination of the onset/illness progression patterns that emerged from the data provided evidence that individuals with ME and CFS experience complex onset patterns. Furthermore, the study findings suggest that the method of categorizing individuals into sudden versus gradual onset groups may not be useful as it fails to capture the more nuanced and varied onset experiences. Prospective research studies that capture the onset period as it is developing could lead to improvements in the way we define and assess ME and CFS onset, and may also lead to methods for early detection, prevention, and individualized treatment approaches for this multifaceted and debilitating illness

Effects of Timeframe on the Recall Reliability of ME/CFS Symptoms

This study served as an investigation of the effects of symptom stability, timeframe length, and momentary symptom severity on the recall reliability of symptoms experienced by individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS symptoms were assessed at four recall timeframes (right now, the past week, the past month, and the past six months) and at two assessment points. Analyses revealed that test-retest reliability was significantly stronger for recall of post-exertlonal malaise (PEM), headaches, and memory problems, when these symptoms were perceived to be stable over time rather than variable. It was also revealed that the optimal timeframe for variable ME/CFS symptoms differed across symptoms. Momentary symptom severity impacted recall reliability for two symptoms (sore throats and concentration problems) and only when the recall timeframe was six months. In general, analyses revealed that the optimal timeframe for reliably reporting stable ME/CFS symptoms is highly uniform, such that each of the symptoms measured were more reliably recalled at the six month timeframe. Furthermore, when symptom stability and momentary severity were removed from the analyses, individuals were most reliable in reporting the majority of their symptoms over a six month timeframe. This study provides evidence that timeframe, symptom stability, and momentary severity can influence the recall reliability of reporting ME/CFS symptoms. Furthermore, results showed that individuals with this illness are capable of reliably recalling their symptoms over longer timeframes than might be expected. An increased awareness and understanding of the impact that these contextual factors on recall reliability of ME/CFS symptoms would likely improve the way in which this complex illness is understood, diagnosed, and treated

The Evolution and Growth of the Eco-Community Psychology Conferences

In the 1960s and 1970s, community psychologists argued for shifting traditional approaches of treating mental illness (e.g. institutionalization, psychotherapy, etc.) toward prevention and more active involvement through community interventions (Bennett et al., 1966). In light of these events, researchers and students committed to the emergent field of community psychology developed several channels to exchange resources and provide support among one another over the past decades. This paper describes the annual Ecological Community Psychology Conference (Eco), which was created by professors and students in 1978, as a vehicle to promote exchanges of ideas and support among community psychology graduate students, community activists, and academics

The Evolution and Growth of the Eco-Community Psychology Conferences

In the 1960s and 1970s, community psychologists argued for shifting traditional approaches of treating mental illness (e.g. institutionalization, psychotherapy, etc.) toward prevention and more active involvement through community interventions (Bennett et al., 1966). In light of these events, researchers and students committed to the emergent field of community psychology developed several channels to exchange resources and provide support among one another over the past decades. This paper describes the annual Ecological Community Psychology Conference (Eco), which was created by professors and students in 1978, as a vehicle to promote exchanges of ideas and support among community psychology graduate students, community activists, and academics

The impact of symptom stability on time frame and recall reliability in CFS

This study is an investigation of the potential impact of perceived symptom stability on the recall reliability of symptom severity and frequency as reported by individuals with chronic fatigue syndrome (CFS). Symptoms were recalled using three different recall time frames (the past week, the past month, and the past six months) and at two assessment points (with one week in between each assessment). Participants were 51 adults (45 women and 6 men), between the ages of 29 and 66 with a current diagnosis of CFS. Multilevel Model Analyses were used to determine the optimal recall time frame (in terms of test–retest reliability) for reporting symptoms perceived as variable and as stable over time. Headaches were recalled more reliably when they were reported as stable over time. Furthermore, the optimal time frame in terms of test–retest reliability for stable symptoms was highly uniform, such that all Fukuda CFS symptoms were more reliably recalled at the six-month time frame. Furthermore, the optimal time frame for CFS symptoms perceived as variable, differed across symptoms. Symptom stability and recall time frame are important to consider in order to improve the accuracy and reliability of the current methods for diagnosing this illness

Corrected Tables for Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity, DSQ v.31 no.1 (Winter 2011)

These tables correct formatting errors that appeared in the previous version of this article.   These tables are authoritative and supercede those in the previous issue of DSQ

Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity

Few studies have explored issues of sensitivity and specificity for using the fatigue construct to identify patients meeting chronic fatigue syndrome (CFS) criteria. In this article, we examine the sensitivity and specificity of several fatigue scales that have attempted to define severe fatigue within CFS. Using Receiver Operating Characteristic (ROC) curve analysis, we found most scales and sub-scales had either significant specificity and/or sensitivity problems. However, the post-exertional subscale of the ME/CFS Fatigue Types Questionnaire (Jason, Jessen, et al., 2009) was the most promising in terms of specificity and sensitivity. Among the more traditional fatigue scales, Krupp, LaRocca, Muir-Nash, and Steinberg’s (1989) Fatigue Severity Scale had the best ability to differentiate CFS from healthy controls. Selecting questions, scales and cut off points to measure fatigue must be done with extreme care in order to successfully identify CFS cases

Screening and support for emotional burdens of youth with type 1 diabetes: Strategies for diabetes care providers

Multiple sources of burden for youth with type 1 diabetes (T1D) impact key outcomes including quality of life, self-management, and glycemic control. Professional diabetes organizations recommend diabetes care providers screen for psychosocial and behavioral challenges and implement strategies to support youth with T1D. The purpose of this article is to review the literature and recommend practical strategies medical providers can use for screening and behavioral support for youth with diabetes and their families. As part of their routine medical care, diabetes care providers are well-positioned to identify and intervene to address emotional distress related to the burdens of living with diabetes. In collaboration with multidisciplinary team members, including psychologists and mental health professionals, medical providers may be able to successfully implement brief behavioral strategies for screening and providing emotional support