Adolescent and parent factors related to fatigue in paediatric multiple sclerosis and chronic fatigue syndrome: A comparative study

Abstract:

BACKGROUND: Fatigue is a disabling, poorly understood symptom in children and adolescents with multiple sclerosis (caMS), for which effective treatments are lacking. In paediatric Chronic Fatigue Syndrome (CFS), effective psychological interventions have been developed based on psychosocial factors associated with fatigue. This study aimed to identify potentially modifiable factors of fatigue in caMS by comparing caMS, adolescents with CFS, healthy adolescents and their parents on measures of fatigue, psychosocial factors, and neurocognitive functioning.

METHODS: 175 participants including 30 caMS (15 fatigued, 15 non-fatigued), 30 adolescents with CFS, 30 healthy controls, and their parents were compared on measures of self- and parent-reported fatigue, adolescent and parent cognitive behavioural responses to symptoms, sleep, psychological difficulties, parental distress and objectively measured neurocognitive functioning.

RESULTS: Fatigue severity, functional impairment and cognitive behavioural responses to symptoms were equivalent in fatigued caMS and adolescents with CFS, and were significantly higher than in healthy controls and non-fatigued caMS. Neurocognitive functioning was impaired in both caMS groups, but was normal in adolescents with CFS and healthy controls. No between-group differences were identified in adolescent sleep behaviour or psychological difficulties. Parents of all illness groups had more unhelpful cognitions than parents of healthy controls. Psychological distress was elevated in parents of both fatigued groups.

CONCLUSIONS: Fifty percent of caMS reported clinically significant fatigue. Similarities between adolescent and parent cognitive behavioural factors in fatigued caMS and adolescents with CFS suggest important potential targets for intervention. Both fatigued and non-fatigued caMS had cognitive difficulties, suggesting that fatigue may need targeted intervention.

Crown Copyright © 2018. Published by Elsevier Ltd. All rights reserved.

Source: Carroll S, Chalder T, Hemingway C, Heyman I, Bear H, Sweeney L, Moss-Morris R. Adolescent and parent factors related to fatigue in paediatric multiple sclerosis and chronic fatigue syndrome: A comparative study. Eur J Paediatr Neurol. 2018 Nov 2. pii: S1090-3798(18)30016-3. doi: 10.1016/j.ejpn.2018.10.006. [Epub ahead of print]  https://www.ncbi.nlm.nih.gov/pubmed/30455131

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome.

Abstract:

Prior research has found a heightened risk of suicide in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is possible that a number of factors including stigma, unsupportive social interactions, and severe symptoms could lead to the development of depression, suicidal ideation, and heightened risk of suicide in this patient population. Prior studies have indicated that patients often report the legitimacy of their illness being questioned by family, friends, and even their physicians.

This study aimed to determine whether stigma experienced, social support, symptomology, and functioning may be associated with depression and endorsement of suicidal ideation (SI) in patients with a self-reported diagnosis of ME or CFS. Findings indicated that participants that endorsed both SI and depression, in contrast to those that did not, experienced more frequent unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others.

In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression These findings highlight the importance of stigma and unsupportive social interactions as risk factors for suicidal thoughts or actions among patients with ME and CFS. Community psychologists have an important role to play in helping educate health care professionals and the public to these types of risk factors for patients marginalized by ME and CFS.

Source: McManimen SL, McClellan D, Stoothoff J, Jason LA. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. J Community Psychol. 2018 Nov;46(8):959-971. doi: 10.1002/jcop.21984. Epub 2018 May 4. https://www.ncbi.nlm.nih.gov/pubmed/30311972

Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale

Abstract:

This study adapted a chronic illness stigma scale and explored its psychometric properties. The main purposes were to confirm the factor structure of the instrument with this population and address the previous factor intercorrelation discrepancies. Five hundred and fifty-four individuals with myalgic encephalomyelitis or chronic fatigue syndrome completed the adapted stigma scale.

Results document the stigma experienced by an international sample of individuals with myalgic encephalomyelitis and chronic fatigue syndrome. Factors demonstrated good internal consistency, and a model fit was found in a confirmatory factor analysis. Participants endorsed high levels of stigma, estrangement, and disclosure. Implications of these findings and future directions are discussed.

Source: Terman JM, Awsumb JM, Cotler J, Jason LA. Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale. J Health Psychol. 2018 Sep 5:1359105318796906. doi: 10.1177/1359105318796906. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30183363

Chronic fatigue syndrome and the somatic expression of emotional distress: Applying the concept of illusory mental health to address the controversy

Abstract:

OBJECTIVE: The process of somatization in chronic fatigue syndrome (CFS) was investigated using the concept of illusory mental health (IMH). IMH involves self-reporting low emotional distress alongside performance-based assessment of distress.

METHOD: We studied IHM and physical symptoms in 175 women across four groups: (a) CFS plus depression; (b) CFS with no depression (CFS-ND); (c) depressive disorder without CFS; and (d) healthy controls (HC). IMH was assessed using a self-report measure plus the performance-based Early Memory Index (EMI).

RESULTS: CFS-NDs were no more likely to have IMH compared with HCs. Among the CFS-NDs, IMH was associated with more physical symptoms. For CFS-NDs, EMI added meaningfully beyond self-reported mental health in predicting physical symptoms.

CONCLUSION: Findings refute reducing CFS to somatization, but there is a subgroup of CFS whose lacking access to emotional distress is associated with heightened physical symptomatology.

Source: Bram AD, Gottschalk KA, Leeds WM. Chronic fatigue syndrome and the somatic expression of emotional distress: Applying the concept of illusory mental health to address the controversy. J Clin Psychol. 2018 Aug 28. doi: 10.1002/jclp.22692. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30152867
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Association between cytokines and psychiatric symptoms in chronic fatigue syndrome and healthy controls

Abstract:

PURPOSE: The reports regarding the status of the immune system in patients with chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) have been inconclusive. We approached this question by comparing a strictly defined group of CFS/ME outpatients to healthy control individuals, and thereafter studied cytokines in subgroups with various psychiatric symptoms.

MATERIALS AND METHODS: Twenty patients diagnosed with CFS/ME according to the Fukuda criteria and 20 age- and sex-matched healthy controls were enrolled in the study. Plasma was analysed by ELISA for levels of the cytokines TNF-α, IL-4, IL-6 and IL-10. Participants also answered questionnaires regarding health in general, and psychiatric symptoms in detail.

RESULTS: Increased plasma levels of TNF-α in CFS/ME patients almost reached significance compared to healthy controls (p = .056). When studying the CFS/ME and control groups separately, there was a significant correlation between TNF-α and The Hospital Anxiety and Depression Scale (HADS) depressive symptoms in controls only, not in the CFS/ME group. A correlation between IL-10 and psychoticism was found in both groups, whereas the correlation for somatisation was seen only in the CFS/ME group. When looking at the total population, there was a significant correlation between TNF-α and both the HADS depressive symptoms and the SCL-90-R cluster somatisation. Also, there was a significant association between IL-10 and the SCL-90-R cluster somatisation when analyzing the cohort (patients and controls together).

CONCLUSIONS: These findings indicate that immune activity in CFS/ME patients deviates from that of healthy controls, which implies potential pathogenic mechanisms and possible therapeutic approaches to CFS/ME. More comprehensive studies should be carried out on defined CFS/ME subgroups.

Source: Groven N, Fors EA, Iversen VC, White LR, Reitan SK. Association between cytokines and psychiatric symptoms in chronic fatigue syndrome and healthy controls. Nord J Psychiatry. 2018 Jul 31:1-5. doi: 10.1080/08039488.2018.1493747. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30063870

Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness

Abstract:

Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in patients with myalgic encephalomyelitis and chronic fatigue syndrome, but specific risk factors have been unexplored. We qualitatively analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria.

Two themes were developed: (1) feeling trapped and (2) loss of self, loss of others, stigma and conflict. Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.

Source: Devendorf AR, McManimen SL, Jason LA. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2018 Jul 1:1359105318785450. doi: 10.1177/1359105318785450. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29992837

Reduction of Glucocorticoid Receptor Function in Chronic Fatigue Syndrome

Abstract:

Glucocorticoid receptor (GR) function may have aetiopathogenic significance in chronic fatigue syndrome (CFS), via its essential role in mediating inflammatory responses as well as in hypothalamic-pituitary-adrenal axis regulation. GR function can be estimated ex vivo by measuring dexamethasone (dex) modulation of cytokine response to lipopolysaccharide (LPS), and in vivo using the impact of dex on cortisol levels. This study aimed to compare the GR function between CFS (n = 48), primary Sjögren’s syndrome (a disease group control) (n = 27), and sedentary healthy controls (HCs) (n = 20), and to investigate its relationship with clinical measures.

In the GR ex vivo response assay, whole blood was diluted and incubated with LPS (to stimulate cytokine production), with or without 10 or 100 nanomolar concentrations of dex. Cytometric bead array (CBA) and flow cytometry enabled quantification of cytokine levels (TNFα, interleukin- (IL-) 6, and IL-10) in the supernatants. In the in vivo response assay, five plasma samples were taken for determination of total cortisol concentration using ELISA at half-hourly intervals on two consecutive mornings separated by ingestion of 0.5 mg of dex at 11 pm. The association of the data from the in vivo and ex vivo analyses with reported childhood adversity was also examined.

CFS patients had reduced LPS-induced IL-6 and TNFα production compared to both control groups and reduced suppression of TNFα by the higher dose of dex compared to HCs. Cortisol levels, before or after dex, did not differ between CFS and HCs. Cortisol levels were more variable in CFS than HCs. In the combined group (CFS plus HC), cortisol concentrations positively and ex vivo GR function (determined by dex-mediated suppression of IL-10) negatively correlated with childhood adversity score.

The results do not support the hypothesis that GR dysregulation is aetiopathogenic in CFS and suggest that current and future endocrine cross-sectional studies in CFS may be vulnerable to the confounding influence of childhood trauma which is likely increased by comorbid depression.

Source: Lynn M, Maclachlan L, Finkelmeyer A, Clark J, Locke J, Todryk S, Ng WF, Newton JL, Watson S. Reduction of Glucocorticoid Receptor Function in Chronic Fatigue Syndrome. Mediators Inflamm. 2018 Jun 10;2018:3972104. doi: 10.1155/2018/3972104. eCollection 2018. https://www.ncbi.nlm.nih.gov/pubmed/29983634

The biopolitics of CFS/ME

Abstract:

This paper argues that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) constitutes a biopolitical problem, a scientific object which needs to be studied, classified and regulated. Assemblages of authorities, knowledges and techniques make CFS/ME subjects and shape their everyday conduct in an attempt to increase their supposed autonomy, wellbeing and health. CFS and CFS/ME identities are however made not only through government, scientific, and medical interventions but also by the patients themselves, a biosocial community who collaborates with scientists, educates itself about the intricacies of biomedicine, and contests psychiatric truth claims. CFS/ME is an illness trapped between medicine and psychology, an illness that is open to debate and therefore difficult to manage and standardise. The paper delineates different interventions by medicine, science, the state and the patients themselves and concludes that CFS/ME remains elusive, only partially standardised, in an on-going battle between all the different actors that want to define it for their own situated interests.

Source: Karfakis N. The biopolitics of CFS/ME. Stud Hist Philos Biol Biomed Sci. 2018 Jun 8. pii: S1369-8486(17)30070-5. doi: 10.1016/j.shpsc.2018.05.009. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29887516

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome

Abstract:

Prior research has found a heightened risk of suicide in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is possible that a number of factors including stigma, unsupportive social interactions, and severe symptoms could lead to the development of depression, suicidal ideation, and heightened risk of suicide in this patient population. Prior studies have indicated that patients often report the legitimacy of their illness being questioned by family, friends, and even their physicians. This study aimed to determine whether stigma experienced, social support, symptomology, and functioning may be associated with depression and endorsement of suicidal ideation (SI) in patients with a self‐reported diagnosis of ME or CFS.

Findings indicated that participants that endorsed both SI and depression, in contrast to those that did not, experienced more frequent unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others. In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression. These findings highlight the importance of stigma and unsupportive social interactions as risk factors for suicidal thoughts or actions among patients with ME and CFS. Community psychologists have an important role to play in helping educate health care professionals and the public to these types of risk factors for patients marginalized by ME and CFS.

Source: Stephanie L. McManimen, Damani McClellan, Jamie Stoothoff, Leonard A. Jason. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Community Psychology, May 2018. https://doi.org/10.1002/jcop.21984

Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Abstract:

Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are stigmatizing illnesses characterized by cognitive difficulties, post-exertional malaise, unrefreshing sleep, and other symptoms. Patients are often incapacitated and stigmatized as having a psychological disorder.

The Chronic Fatigue Attitudes Test (CAT) assesses stigmatizing views toward individuals with Chronic Fatigue Syndrome, however, there is little research examining factors that may account for variation in stigmatizing attitudes toward this group. We examined CAT scores among college age research volunteers (N = 90), hypothesizing that exposure to information about ME and CFS as a result of volunteering on a ME and CFS-related research project would be associated with less stigmatizing attitudes compared to volunteers on unrelated projects.

Findings indicated that ME and CFS research volunteers expressed less stigmatizing attitudes. Educational efforts aiming to disseminate accurate information about ME and CFS may mitigate stigma and the experience of stigma among individuals with ME and CFS.

Source: Nehrke PI, Fox PA, Jason LA. Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Neurology (ECronicon). 2017;7(4):172-178. Epub 2017 Aug 16.  https://www.ncbi.nlm.nih.gov/pubmed/29662969