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

Abstract

BackgroundMunicipal 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.MethodsA 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.ResultsAll 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.ConclusionsThe 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-017-0614-4) contains supplementary material, which is available to authorized users.

Factors impacting the illness trajectory of post-infectious fatigue syndrome: a qualitative study of adults’ experiences

“…The participants experienced a five-phased illness trajectory: prodromal, downward, turning, upward and chronic phase [ 47 ]. Here we present impacting factors during the illness trajectory, organized into external/internal and helpful/unhelpful impacting factors for each phase, as experienced and described by the participants.…”

“…This scale may assist in monitoring the trajectory. Our previously proposed disability model of PIFS (PIFSDM) [ 47 ], the models of Fennel [ 44 ], Ware [ 45 ], Whitehead [ 46 ] and the proposed model of impacting factors in PIFS (PIFSIM) during a four-year long trajectory, presented here, may be seen as complementary means to understand the evolving condition and facilitate clinical observations and help planning treatment in accordance with the needs of each phase. All models are flexible and take into account the relapsing and remitting nature of the condition.…”

“…An example of how raw data was categorized is found in Table 3 . The different phases of the illness trajectory are described in detail elsewhere [ 47 ].…”

“…However, these models have not explored how the illness and disability trajectory evolves over time during a natural course of the condition following a confirmed infection. Thus, the authors have previously proposed a model of disability trajectory (PIFSDM) consisting of five phases: prodromal, downward, transition, upward and chronic [ 47 ]. This model outlines the phases and changes in illness severity and different disabilities over time.…”

FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review

“…Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) or ME/CFS is a debilitating multisystem disease as concluded by the American Institute of Medicine (IOM) in February 2015 after an extensive review of the literature [ 1 ]. It is characterized by rapid (muscle) fatigability after trivial exertion with an abnormally delayed recovery, pain, neurological complaints and autonomic and immunological dysfunction [ 2 ], often resulting in severe functional limitations [ 3 ] rendering at least 25% of patients house and/or bed bound [ 1 ]. The IOM also concluded that there is no effective treatment for it [ 1 ] and the American Federal Agency for Healthcare Research and Quality, removed its recommendation for CBT and GET in July 2016, after concluding that there is no evidence that these treatments are effective [ 4 ].…”