Adolescent’s descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents

ObjectiveAs part of a larger qualitative study to explore outcomes important in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) and what improvements in fatigue and disability are key, interviews were undertaken with adolescents and their parents. This paper focuses on their descriptions of fatigue, fluctuation of symptoms and payback.Design and settingSemistructured qualitative interviews were undertaken between December 2014 and February 2015. Adolescents and parents were interviewed separately. Participants were recruited from a single specialist paediatric chronic fatigue service. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.ParticipantsWe interviewed 21 adolescents and their parents (20 mothers and 2 fathers). The adolescents were aged between 12 and 17 years of age (mean age 14.4 years), mild to moderately affected by CFS/ME (not housebound) and the majority were female (16/21).ResultsAll adolescents with CFS/ME reported fatigue, a natural fluctuation of the condition, with good days and bad days as well as an increase in symptoms after activity (payback). However, adolescent’s descriptions of fatigue, symptoms and the associated impact on their daily lives differed. The variations included: fatigue versus a collection of symptoms, constant versus variable symptoms and variable symptom severity. There were differences between participants in the amount of activity taken to cause payback. The impact of fatigue and symptoms on function ranged from: limiting the duration and amount of leisure activities, struggling with daily activities (eg, self-care) to no activity (sedentary).ConclusionsFatigue, fluctuation of the condition and payback after activity are described by all adolescents with CFS/ME in this study. However, the individual experience in terms of how they describe it and the degree and impact varies.

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Exploratory study into the relationship between the symptoms of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and fibromyalgia (FM) using a quasiexperimental design

BMJ Open ◽

10.1136/bmjopen-2020-041947 ◽

2021 ◽

Vol 11 (2) ◽

pp. e041947

Author(s):

Pamela G Mckay ◽

Helen Walker ◽

Colin R Martin ◽

Mick Fleming

Keyword(s):

Quality Of Life ◽

Chronic Fatigue Syndrome ◽

Chronic Fatigue ◽

Myalgic Encephalomyelitis ◽

Anxiety And Depression ◽

Symptom Experience ◽

Fatigue Syndrome ◽

The Impact ◽

The Relationship

ObjectiveTo explore the relationship between symptoms of chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and fibromyalgia (FM). The hypothesis predicated that there would be no significant differences between the group’s symptom experience.DesignA quasiexperimental design. Structural equation modelling (SEM) and invariance testing.ParticipantsMales (M) and females (F) >16 with a confirmed diagnosis of CFS/ME or FM by a general practitioner or specialist. CFS/ME (n=101, F: n=86, M: n=15, mean (M) age M=45.5 years). FM (n=107, F: n=95, M: n=12, M=47.2 years).Outcome measuresDiagnostic criteria: the American Centers for Disease Control and Prevention (CDC) for CFS/ME and the American College of Rheumatology (ACR) criteria for FM. Additional symptom questionnaires measuring: pain, sleep quality, fatigue, quality of life, anxiety and depression, locus of control and self-esteem.ResultsInvariance was confirmed with the exception of the American CDC Symptom Inventory, Fibromyalgia Impact Questionnaire and Hospital Anxiety and Depression Scale (p<0.05) based on five questions. Consequently, it was erroneous to conclude differences. Therefore, the Syndrome Model was created. SEM could not have tested the ACR previously, as it comprised a single data point. Thus, it was combined with these three questionnaires, increasing the data points, to create this new measurable model. Results confirmed no significant differences between groups (p=0.07 (p<0.05)).ConclusionParticipants responded in a similar manner to the questionnaire, confirming the same symptom experience. It is important to consider this in context with differing criteria and management guidelines, as this may influence diagnosis and the trajectory of patient’s management. With the biomedical cause currently unclear, it is the symptom experience and the impact on quality of life that is important. These findings are meaningful for patients, clinicians and policy development and support the requirement for future research.

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Feedback on underperformance in patients with Chronic Fatigue Syndrome: The impact on subsequent neuropsychological test performance

Applied Neuropsychology Adult ◽

10.1080/23279095.2018.1519509 ◽

2018 ◽

Vol 27 (2) ◽

pp. 188-196 ◽

Cited By ~ 3

Author(s):

Jeroen J. Roor ◽

Hans Knoop ◽

Brechje Dandachi-FitzGerald ◽

Maarten J.V. Peters ◽

Gijs Bleijenberg ◽

...

Keyword(s):

Chronic Fatigue Syndrome ◽

Test Performance ◽

Neuropsychological Test ◽

Chronic Fatigue ◽

Fatigue Syndrome ◽

The Impact

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Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Healthcare ◽

10.3390/healthcare9111546 ◽

2021 ◽

Vol 9 (11) ◽

pp. 1546

Author(s):

Helen Brownlie ◽

Nigel Speight

Keyword(s):

Chronic Fatigue Syndrome ◽

Subcutaneous Administration ◽

Immunoglobulin Therapy ◽

Chronic Fatigue ◽

Myalgic Encephalomyelitis ◽

Placebo Control ◽

Fatigue Syndrome ◽

Symptom Exacerbation ◽

High Degree ◽

The Impact

The findings of controlled trials on use of intravenous immunoglobulin G (IV IgG) to treat myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are generally viewed as representing mixed results. On detailed review, a clearer picture emerges, which suggests that the potential therapeutic value of this intervention has been underestimated. Our analysis is consistent with the propositions that: (1) IgG is highly effective for a proportion of patients with severe and well-characterised ME/CFS; (2) responders can be predicted with a high degree of accuracy based on markers of immune dysfunction. Rigorous steps were taken in the research trials to record adverse events, with transient symptom exacerbation commonly experienced in both intervention and placebo control groups, suggesting that this reflected the impact of participation on people with an illness characterised by post-exertional symptom exacerbation. Worsening of certain specific symptoms, notably headache, did occur more commonly with IgG and may have been concomitant to effective treatment, being associated with clinical improvement. The findings emerging from this review are supported by clinical observations relating to treatment of patients with severe and very severe ME/CFS, for whom intramuscular and subcutaneous administration provide alternative options. We conclude that: (1) there is a strong case for this area of research to be revived; (2) pending further research, clinicians would be justified in offering a course of IgG to selected ME/CFS patients at the more severe end of the spectrum. As the majority of trial participants had experienced an acute viral or viral-like onset, we further suggest that IgG treatment may be pertinent to the care of some patients who remain ill following infection with SARS-CoV-2 virus.

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The Disrupted and Realigned Self: Exploring the Narratives of New Zealanders with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

10.26686/wgtn.17003698.v1 ◽

2021 ◽

Author(s):

◽

Lara Joyce Milka Bell

Keyword(s):

Chronic Fatigue Syndrome ◽

Participant Observation ◽

Physical Exertion ◽

Chronic Fatigue ◽

Myalgic Encephalomyelitis ◽

Community Interactions ◽

Self Identity ◽

Authentic Self ◽

Fatigue Syndrome ◽

The Individual

<p>Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) causes pronounced, debilitating fatigue that is not alleviated by rest, along with muscle and joint weakness, pain, cognitive difficulties and can be worsened through mental and physical exertion. However, it is also without an aetiology, and there is little consensus amongst both medical and patient spheres as to what CFS/ME actually is. In this thesis I draw on interviews with people with CFS/ME and participant observation in a patient-led support group in order to explore the way in which CFS/ME shaped participants’ identities and narratives of the self. I argue that participants moved through two stages that I call ‘The Disrupted Self’ and ‘The Realigned Self’. Falling ill with CFS/ME rapidly disrupted participants’ understandings of the bodies, their position within their family and the community, interactions with doctors, and all the usual markers on which they had previously formed their self-identities. In this state, I argue that participants and those with whom they engaged viewed both CFS/ME and my participants as liminal, ‘betwixt and between’ (Turner 1969) social roles and contemporary New Zealand ideals of illness, the individual, and the ‘sick person’. As the initial disruption and confusion of falling ill subsided, however, my participants worked to develop a new secure self-identity, the ‘Realigned Self’. They move into a normalised long-term liminal state by prioritising their health, adjusting their expectations of their body, developing their own conception of the aetiology of CFS/ME and forming a positive narrative of their new lives. This identity work utilised wider cultural ideals about the active, responsibilised and authentic self; common to late modern contemporary life (Beck and Beck-Gernsheim 2001, Desjarlais 1994, Giddens 1991, Rose 1996). Yet this realignment was often not reflected in the views of my participants’ friends, families and doctors. This illustrates the diverse perspectives and different degrees of liminality that exist within experiences and narratives of CFS/ME and contested illnesses.</p>

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School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

NASN School Nurse ◽

10.1177/1942602x18795299 ◽

2018 ◽

Vol 33 (6) ◽

pp. 372-379 ◽

Cited By ~ 2

Author(s):

Kenneth J. Friedman ◽

Beth Mattey ◽

Faith Newton

Keyword(s):

Chronic Fatigue Syndrome ◽

Pediatric Population ◽

School Nurse ◽

Chronic Fatigue ◽

School Nurses ◽

Myalgic Encephalomyelitis ◽

Social Emotional ◽

Fatigue Syndrome ◽

Erroneous Belief ◽

The Impact

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that is defined and diagnosed by its symptoms: extreme fatigue made worse by physical and mental activity, pain and decreased mental stamina, among others. A long-held, erroneous belief that ME/CFS is not a physiological illness has persisted among some clinicians, leading to the denial of a patient’s physical illness and attributing the symptoms to other causes. The debilitating effects of ME/CFS in the pediatric population can affect all aspects of academic, social, emotional, and physical development. ME/CFS has been diagnosed in children younger than 10 years. Therefore, the school nurse is likely to encounter one or more students in the various stages of this disease, putting the school nurse in a position to ameliorate the impact of this potentially devastating chronic condition.

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Correction: Therapist Effects and the Impact of Early Therapeutic Alliance on Symptomatic Outcome in Chronic Fatigue Syndrome

PLoS ONE ◽

10.1371/journal.pone.0156120 ◽

2016 ◽

Vol 11 (5) ◽

pp. e0156120

Author(s):

Lucy P. Goldsmith ◽

Graham Dunn ◽

Richard P. Bentall ◽

Shôn W. Lewis ◽

Alison J. Wearden

Keyword(s):

Chronic Fatigue Syndrome ◽

Therapeutic Alliance ◽

Chronic Fatigue ◽

Therapist Effects ◽

Fatigue Syndrome ◽

Symptomatic Outcome ◽

The Impact

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Effect of psychiatric disorders on outcome of cognitive-behavioural therapy for chronic fatigue syndrome

The British Journal of Psychiatry ◽

10.1192/bjp.187.2.184 ◽

2005 ◽

Vol 187 (2) ◽

pp. 184-185 ◽

Cited By ~ 24

Author(s):

Judith Prins ◽

Gijs Bleijenberg ◽

Eufride Klein Rouweler ◽

Jos Van Der Meer

Keyword(s):

Chronic Fatigue Syndrome ◽

Psychiatric Disorders ◽

Cognitive Behavioural Therapy ◽

Chronic Fatigue ◽

Behavioural Therapy ◽

Psychiatric Diagnoses ◽

Psychiatric Interview ◽

Fatigue Syndrome ◽

Cognitive Behavioural ◽

The Impact

SummaryPsychiatric disorders have been associated with poor outcome in individuals with chronic fatigue syndrome (CFS). This study examines the impact of psychiatric disorders on outcome of cognitive-behavioural therapy (CBT). Psychiatric diagnoses were assessed with a structured psychiatric interview in a CBT trial of 270 people with CFS. Lifetime and current psychiatric disorders were found in 50 and 32% respectively. No significant differences in fatigue severity and functional impairment following treatment were found between participants with and without psychiatric diagnoses.

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