Vision-related symptoms as a clinical feature of chronic fatigue syndrome/myalgic encephalomyelitis? Evidence from the DePaul Symptom Questionnaire

Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) is a debilitating disorder, affecting at least 250,000 people in the UK. Marked by debilitating fatigue, its aetiology is poorly understood and diagnosis controversial. A number of symptoms overlap with other illnesses with the result that CFS/ME is commonly misdiagnosed. It is important therefore that significant clinical features are investigated. People diagnosed with CFS/ME consistently report that they experience vision-related symptoms associated with their illness1-3 with some of these reports being verified experimentally. Although vision-related symptoms may represent a significant clinical feature of CFS/ME that could be useful in its diagnosis, they have yet to be included in clinical guidelines

The Community Narration (CN) Approach: Understanding a Group’s Identity and Cognitive Constructs through Personal and Community Narratives

Community program evaluations, visioning and assessments must always endeavor to attain useful information in the most sensitive way. Most community-based organizations form, grow and continue on their own without the help of outside experts. Participatory approaches should respect the historical evolution of these groups and understand the positive factors that underlie their organizational beliefs. A group’s mission, values and identity should inform any community program evaluation, consulting project, and the design of any research study. Narrative methods have been used with mutual-help groups and many other organizations to good effect (Harré, Bullen, & Olson, 2006; Rappaport, 2000). Such methods have great potential to avoid hierarchical and unidirectional forms of evaluation, encouraging the group’s collective psychology and identity-based constructs to emerge. We developed a participatory, narrative technique called Community Narration (CN), which is described here. The technique utilizes personal stories and community narratives as an entry into the evaluation process or other work involved in understanding an organization. The community’s participants were able to use the technique successfully, found it enriching, and the constructs obtained have led to many discussions and memberguided research related to the organization

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

Abstract Background Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities. Methods A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26–59). The interviews were fully transcribed and subjected to a qualitative content analysis. Results All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities. Conclusions The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis

The Role of Infectious and Stress-related Onsets in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Symptomatology and Functioning

This study examined how the mode of onset for myalgic encephalomyelitis and chronic fatigue syndrome (ME and CFS) impacts patients’ presenting symptomatology. Specifically, this study investigated the differences between the most commonly reported ME and CFS onsets: infectious, stress-related, and a combined infectious and stress-related onset (referred to as ‘combined onset’). Three patient samples were combined and utilized. All participants met Fukuda et al. (1994) criteria and self-reported their illness onset. Analyses showed the infectious group reported the most impairment for general health functioning—which relates to the susceptibility of getting or feeling sick—in comparison to the stress-related group. Meanwhile, both the stress-related and combined groups reported more impairment for mental health functioning than the infectious group. Lastly, the infectious and combined groups reported worse autonomic and immune symptomatology than the stress group. These findings illustrate that the mode of onset for ME and CFS could play a factor in a patient’s prognosis. An infectious onset might lead to worse physical and somatic symptoms, while a stress onset might lead to worse psychological functioning. These findings are consistent with prior research. Future research should continue investigating the differences amongst patients based on illness onset, as well as other factors (e.g., psychiatric co-morbidity)

Parent-Child Discrepancies in Children with Chronic Fatigue Syndrome-Like Symptomatology

In a sample of children and adolescents with symptoms related to chronic fatigue syndrome (CFS), we characterized the relationship between parent and child ratings of symptoms as well as domains of health-related quality of life (HRQOL) relevant for the assessment of substantial reductions in functioning. Parent-child dyads (N = 147) were recruited as part of a community-based epidemiological study of myalgic encephalomyelitis (ME) and CFS in Chicago. Parents and children completed the Children’s Health Questionnaire (CHQ) as well as the DePaul Pediatric Health Questionnaire (DPHQ). Results show that inter-rater reliability between parent and child responses was typically strong, however, in most domains, parents of children with CFS-like symptoms rate their child’s symptoms and HRQOL as more frequent and/or severe than the children themselves. Recommendations are provided for use of parent proxy and child self-report in diagnosis and implementation of case definitions

Motivation for Change in Heroin and Opiate Users

Opioid and heroin abuse is a continuing problem in the United States that has been increasing dramatically since 2000. Common treatment programs tend to use methadone and behavioral therapies that do not focus on motivational factors despite the research suggesting it is an important element to treatment retention and sustained abstinence. Motivation for the purposes of this study is defined as an individual’s inner reasons for change. The current study focused on differences in motivation for change among different substance abusers. We found that opiate and heroin abusers had higher motivational scores in comparison to other substance abusers. These results imply that treatment programs should focus on increasing motivation and explore the circumstances and factors that may hinder it

Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition characterized by a number of symptoms which typically worsen following minimal exertion. Various strategies to manage the limited energy levels have been proposed. Of these, pacing has been consistently rated as one of the most helpful in surveys conducted by patient groups. This review is a response to the paucity of the information on pacing in the scientific literature. Method: We describe the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy. Results: Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise. Conclusion: Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS

Interdisciplinary social action

In this article, we will first consider the starting point for change. Social change is more likely to occur when we have a passionate interest in a particular area. Often the beginning of social change occurs when we have a passionate interest in a particular area. Often the beginning of social change occurs with the recognition that something is wrong and unfair. This recognition may take the form of a flash of outrage, but the feeling is clear: this needs to change. We may not even know why we feel this way, but our intuition can steer us in the right direction. By listening and watching closely, ever present signs and guides will provide us clues and direction. The key is to be open and receptive to them. This intuition can also help us develop and maintain relationships with other critical social change partners

The implications of using a broad versus narrow set of criteria in research

The Fukuda et al. criteria is the most widely used clinical case definition for diagnosing patients with chronic fatigue syndrome (CFS). Despite the frequency with which the Fukuda criteria are applied, the list of symptoms outlined in this case definition were not well enough specified to be easily applied to research settings. In 2005, Reeves et al. laid out a set of standards for operationalizing the Fukuda definition, specifying scales and cutoff scores for measuring the symptom criteria. This operationalization, often known as the empirical criteria, has been shown to identify an unexpectedly large number of patients, seemingly widening the net of inclusion for CFS diagnostic criteria. However, in a recent study in 2016 by Unger and colleagues it has been suggested that the 2005 Reeves et al. 2005 operationalization of the Fukuda criteria does not over-identify the number of patients with CFS as had been previously reported. This article reviews prior studies which provide context for these findings and offers a possible explanation for the discrepancies. Clearly, determining what case definition to use and how to operationalize it remains an important activity for scientists in this field, as it will influence work in multiple domains, including etiology, pathophysiology, epidemiology and treatment