Megan Arroll

Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: An interpretative phenomenological analysis

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a condition of unknown aetiology that consists of symptoms such as fatigue, muscle and joint pain, gastric problems and a range of neurological disturbances. Due to the fact that these symptoms are complaints that most individuals will experience to a varying degree, it seems pertinent to investigate the processes by which those with CFS/ME conceptualise their symptoms and the experience of reaching a diagnosis. Participants were recruited from local CFS/ME support groups. Eight semi-structured telephone interviews were conducted and transcribed, and the verbatim transcriptions were analysed according to interpretative phenomenological analysis (IPA). Six distinct themes were uncovered that illustrated the participants’ experience and perception of their symptoms. These included symptomatology and illness course, interference with daily and working life, frequency of symptoms, external information, diagnosis and treatment. The findings were discussed in terms of internal and external cues related to symptom perception and the discovery that the possession of a diagnosis did not necessarily signify the end of the journey.

Meniere's disease

Menieres disease (MD) is a disorder of the inner ear that causes vertigo attacks, fluctuating hearing loss, tinnitus and aural fullness. The aetiology of MD is multifactorial. A characteristic sign of MD is endolymphatic hydrops (EH), a disorder in which excessive endolymph accumulates in the inner ear and causes damage to the ganglion cells. In most patients, the clinical symptoms of MD present after considerable accumulation of endolymph has occurred. However, some patients develop symptoms in the early stages of EH. The reason for the variability in the symptomatology is unknown and the relationship between EH and the clinical symptoms of MD requires further study. The diagnosis of MD is based on clinical symptoms but can be complemented with functional inner ear tests, including audiometry, vestibular-evoked myogenic potential testing, caloric testing, electrocochleography or head impulse tests. MRI has been optimized to directly visualize EH in the cochlea, vestibule and semicircular canals, and its use is shifting from the research setting to the clinic. The management of MD is mainly aimed at the relief of acute attacks of vertigo and the prevention of recurrent attacks. Therapeutic options are based on empirical evidence and include the management of risk factors and a conservative approach as the first line of treatment. When medical treatment is unable to suppress vertigo attacks, intratympanic gentamicin therapy or endolymphatic sac decompression surgery is usually considered. This Primer covers the pathophysiology, symptomatology, diagnosis, management, quality of life and prevention of MD.

Psychosocial factors involved in memory and cognitive failures in people with myalgic encephalomyelitis/chronic fatigue syndrome.

Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by persistent emotional, mental, and physical fatigue accompanied by a range of neurological, autonomic, neuroendocrine, immune, and sleep problems. Research has shown that psychosocial factors such as anxiety and depression as well as the symptoms of the illness, have a significant impact on the quality of life of people with ME/CFS. In addition, individuals may suffer from deficits in memory and concentration. This study set out to explore the relationships between variables which have been found to contribute to cognitive performance, as measured by prospective and retrospective memory, and cognitive failures. Methods Eighty-seven people with ME/CFS answered questionnaires measuring fatigue, depression, anxiety, social support, and general self-efficacy. These were used in a correlational design (multiple regression) to predict cognitive function (self-ratings on prospective and retrospective memory), and cognitive failures. Results Our study found that fatigue, depression, and general self-efficacy were directly associated with cognitive failures and retrospective (but not prospective) memory. Conclusion Although it was not possible in this study to determine the cause of the deficits, the literature in this area leads us to suggest that although the pathophysiological mechanisms of ME/CFS are unclear, abnormalities in the immune system, including proinflammatory cytokines, can lead to significant impairments in cognition. We suggest that fatigue and depression may be a result of the neurobiological effects of ME/CFS and in addition, that the neurobiological effects of the illness may give rise to both fatigue and cognitive deficits independently.

'The letting go, the building up, [and] the gradual process of rebuilding': identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome.

The aim of this study was to explore the phenomenon of identity change and subsequent post-traumatic growth (PTG) in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Ten participants (average illness duration 7.4 years) were interviewed (average length, 79 minutes) via a semi-structured interview schedule and verbatim transcriptions were analysed with interpretative phenomenological analysis. The four superordinate themes revealed were ‘comparisons of past to present self: “you have to be someone else, and you have to live with that’’’, ‘the effect of social isolation on identity and subsequent insights into others’ behaviours’, ‘contemplation of future and identity: ‘‘where do I go from here?”’, and ‘PTG: “the letting go, the building up, [and] the gradual process of rebuilding”’. These themes outlined the experiences of those with ME/CFS as they underwent changes in identity due to the limitations the condition imposed on activities and roles, understanding others’ behaviours after a period of isolation, the comparison of the past self with the present self and finally, the positive growth that was noted by two of the interviewees with regards to a new ‘true’ self. Despite the distressing and unpredictable nature of ME/CFS, it appears that individuals with this disorder can experience personal growth.

The relationship between symptom severity, stigma, illness intrusiveness and depression in Mal de Debarquement Syndrome:

Mal de Debarquement Syndrome is a neurological disorder of motion perception, triggered by external motion. This study aimed to determine the importance of psychosocial factors in relation to depression and quality of life in Mal de Debarquement Syndrome. A total of 66 participants with self-reported Mal de Debarquement Syndrome completed quality-of-life, symptom severity, stigma, depression, and illness intrusiveness measurements in this naturalistic correlational study. Mal de Debarquement Syndrome was associated with high levels of depression and illness intrusiveness. Illness intrusiveness mediated between stigma and quality of life; also the level of stigma moderated the effect of illness intrusiveness on quality of life. Targeted interventions aimed at alleviating psychological distress may improve quality of life in Mal de Debarquement Syndrome.

People with symptoms of Ménière's disease: the relationship between illness intrusiveness, illness uncertainty, dizziness handicap, and depression.

Hypothesis The goal of this study was to assess the impact of dizziness handicap, illness intrusiveness (in relation to vertigo, tinnitus, and hearing problems), and illness uncertainty on depression in people with the symptoms of Ménière’s disease. Background Ménière’s disease is a progressive disease of the inner ear, the symptoms of which are vertigo, tinnitus, hearing loss, and aural fullness. Although pharmacologic treatments may reduce acute vertigo spells and dizziness, they rarely disappear entirely. Previous research shows that Ménière’s disease is unpredictable and has a negative impact on patients’ quality of life. Methods Questionnaires measuring Dizziness Handicap, Illness Intrusiveness, Illness Uncertainty, and Depression were completed by 74 people with self-reported symptoms of Ménière’s disease. Bivariate correlations, repeated-measures analysis of variance, and multiple regression analyses were used to assess the contribution of dizziness handicap, illness intrusiveness, and illness uncertainty to depression. Conclusion Vertigo was more intrusive than tinnitus, hearing problems, and most other comparator illnesses. The intrusiveness of the symptoms of Ménière’s disease accounted for 32% of the variance in depression scores, which were high; illness uncertainty did not account for additional variance. Dizziness handicap accounted for 31% of the variation in depression. Although the symptoms of Ménière’s disease may not be alleviated by psychological methods, programs that target cognitions in relation to the embarrassment in front of others, and the feeling of being handicapped, may lessen the psychosocial impact of the symptoms of Ménière’s disease, which may reduce some of the depression felt in this group.

The delayed fatigue effect in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating, long-term condition characterised by extreme fatigue (worsened by exertion), muscle and joint pain, and sleep disturbance. Post-exertional fatigue has been demonstrated previously following physical exercise, but not from mental exertion alone. Purpose: The aim of this exploratory study was to assess the ‘delayed fatigue effect,’ in this instance fatigue two days post-challenge, following a cognitively fatiguing task. Methods: Thirty-two participants (23 women; mean age 44, SD = 11.24; mean illness duration nine years, SD = 7.32) completed the Cambridge Neuropsychological Test Automated Battery, which acted as the cognitive challenge. Self-report measures were also completed that assessed fatigue (Multidimensional Fatigue Inventory; MFI), and anxiety and depression (Hospital Anxiety and Depression Scale; HADS) pre- and two days post-testing. Results: Significant differences were found between pre- and post-test measures in three MFI sub-scales of fatigue (general, mental, and physical) and on the depression scale of the HADS. However, there were no significant changes in motivation, activity level, or self-reported anxiety scores. Conclusions: These findings are suggestive of post-exertional symptom exacerbation following mental effort. This may have implications for working environments that present cognitive demands to individuals with ME/CFS.

A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting

Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition characterised by severe and persistent fatigue, neurological disturbances, autonomic and endocrine dysfunctions and sleep difficulties that have a pronounced and significant impact on individuals’ lives. Current National Institute for Health and Clinical Excellence guidelines within the UK suggest that this condition should be treated with cognitive behavioural therapy and/or graded exercise therapy, where appropriate. There is currently a lack of an evidence base concerning alternative techniques that may be beneficial to those with ME/CFS. Objectives This study aimed to investigate whether three modalities of psychology, nutrition and combined treatment influenced symptom report measures in those with ME/CFS over a 3-month time period and whether there were significant differences in these changes between groups. Design and setting This is a preliminary prospective study with one follow-up point conducted at a private secondary healthcare facility in London, UK. Participants 138 individuals (110 females, 79.7%; 42 participants in psychology, 44 in nutrition and 52 in combined) participated at baseline and 72 participants completed the battery of measures at follow-up (52.17% response rate; 14, 27 and 31 participants in each group, respectively). Outcome measures Self-reported measures of ME/CFS symptoms, functional ability, multidimensional fatigue and perceived control. Results Baseline comparisons showed those in the combined group had higher levels of fatigue. At follow-up, all groups saw improvements in fatigue, functional ability and symptomatology; those within the psychology group also experienced a shift in perceived control over time. Conclusions This study provides early evidence that psychological, nutritional and combined techniques for the treatment of ME/CFS may influence symptomatology, fatigue, function and perceived control. However, these results must be viewed with caution as the allocation to groups was not randomised, there was no control group and the study suffered from high drop-out rates.

Pilot study investigating the utility of a specialized online symptom management program for individuals with myalgic encephalomyelitis/chronic fatigue syndrome as compared to an online meditation program

Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term, debilitating condition that impacts numerous areas of individuals’ lives. The two predominant treatment options for ME/CFS are cognitive behavioral therapy and graded exercise therapy; however, many people have found these techniques unacceptable or even damaging. This pilot study aimed to evaluate the utility of a specialized online symptom management program for ME/CFS in comparison to an online meditation program in an effort to ascertain whether this tool could be a further option for those with ME/CFS. Methods This experimental design consisted of two interventions: a specialized online symptoms management program (N=19) and a control intervention based on an online meditation website (N=9). A battery of questionnaires, including measures of multidimensional fatigue, illness-specific symptoms, perceived control, and mindful awareness, were completed before the participants commenced use of the programs and following 8 weeks’ use. Results Significant differences were found in the areas of chance and powerful others’ locus of control, and sleeping difficulties, but not in ME/CFS symptomatology overall. Conclusion The specialized online program described in this study warrants further investigation, as it appears to influence perceived control and key ME/CFS symptoms over time.

The Influence of the Xenotropic Murine Leukaemia Virus-Related Virus (XMRV) Research Findings on the Thoughts and Feelings of People Living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a condition of unknown aetiology characterised by severe physical and mental fatigue, musculoskeletal pain, and cognitive disturbances. Due to the lack of a clear biological marker, those with CFS/ME frequently encounter stigma and delegitimation of illness, causing them psychological distress. Individuals with CFS/ME tend to reject the psychogenic model associated with CFS/ME in favour of a viral or immunological explanation: a perception which appears to aid their understanding of their illness. A recent, widely publicised study by Lombardi et al. (2009) claimed to have identified a link between xenotropic murine leukaemia virus-related virus (XMRV) and CFS/ME. In this context, an investigation of the influence of these research findings on the thoughts and feelings of people living with CFS/ME was conducted. Nine semi-structured telephone interviews were conducted with support group members in the United Kingdom. Interpretative Phenomenological Analysis (IPA; Smith 1996) was used to uncover three superordinate themes: XMRV and the legitimation of CFS/ME, a cautious response to the research findings, and criticism of the reaction to the XMRV research of fellow individuals with CFS/ME. The findings are discussed in relation to the existing literature surrounding illness representations, with a critique of the present study.