2011 – Page 3 – American ME and CFS Society

The role of acceptance in chronic fatigue syndrome

Abstract:

OBJECTIVE: In this paper we consider the role that acceptance plays in fatigue and physical and social functioning. We predicted that lack of acceptance would be positively correlated with fatigue and impairment in functioning; that there would be a significant relationship between perfectionism and acceptance; and cognitive behavioural therapy (CBT) would increase acceptance.

METHODS: Two hundred and fifty nine patients with chronic fatigue syndrome (CFS) completed questionnaires measuring fatigue, physical functioning, work and social adjustment, lack of acceptance, perfectionism and depression. Ninety consecutive attenders received a course of CBT and completed further questionnaires at discharge and 3months post-treatment. Correlations and multiple hierarchical regressions were used to determine relationships between acceptance, perfectionism and clinical outcome variables.

RESULTS: At baseline, lack of acceptance was the key factor associated with impaired physical functioning and work and social adjustment. Lack of acceptance and doubts about actions were associated with fatigue in a multiple regression analysis. At discharge and follow-up patients showed significantly increased acceptance, as well as reduced Concern over Mistakes, less fatigue and impairment of physical functioning, and improved work and social adjustment.

CONCLUSION: This is the first study to our knowledge which shows a change in acceptance after CBT and a relationship between acceptance and perfectionism. Acceptance may be an important factor to consider within treatments for CFS.

Source: Brooks SK, Rimes KA, Chalder T. The role of acceptance in chronic fatigue syndrome. J Psychosom Res. 2011 Dec;71(6):411-5. doi: 10.1016/j.jpsychores.2011.08.001. Epub 2011 Sep 16. https://www.ncbi.nlm.nih.gov/pubmed/22118384

Childhood maltreatment and the response to cognitive behavior therapy for chronic fatigue syndrome

Abstract:

OBJECTIVE: To examine the relationship between a history of childhood maltreatment and the treatment response to cognitive behavior therapy for chronic fatigue syndrome (CFS).

METHODS: A cohort study in a tertiary care clinic with a referred sample of 216 adult patients meeting the Centers for Disease Control and Prevention criteria for CFS, and starting cognitive behavior therapy. Main outcome measures changes between pre- and post therapy in fatigue (Checklist Individual Strength fatigue subscale), disabilities (Sickness Impact Profile total score), physical functioning (short form 36 health survey subscale) and psychological distress (Symptom checklist 90 total score).

RESULTS: At baseline, patients with a history of childhood maltreatment had significantly more limitations and a higher level of psychological distress, but were not more severely fatigued. Change scores on the outcome measures after cognitive behavior therapy did not differ significantly between patients with or without a history of childhood maltreatment, or between the different types of childhood maltreatment. However, patients with a history of childhood maltreatment still experienced more limitations and a higher level of psychological distress after CBT.

CONCLUSIONS: A history of childhood maltreatment was not related to the treatment response of cognitive behavior therapy for CFS. In patients with a history of childhood maltreatment CFS symptoms can be treated with CBT just as well as those without.

Source: Heins MJ, Knoop H, Lobbestael J, Bleijenberg G. Childhood maltreatment and the response to cognitive behavior therapy for chronic fatigue syndrome. J Psychosom Res. 2011 Dec;71(6):404-10. doi: 10.1016/j.jpsychores.2011.05.005. Epub 2011 Jun 30. https://www.ncbi.nlm.nih.gov/pubmed/22118383

Up-regulation of TGF-β1 mRNA expression in peripheral blood mononuclear cells of patients with chronic fatigue syndrome

Abstract:

BACKGROUND/PURPOSE: It has been shown that the abnormality in immune cells in chronic fatigue syndrome (CFS) patients is closely associated with the participation of TGF-β. In order to study the relationship between TGF-β1 and CFS, we investigated the mRNA levels of TGF-β1 in peripheral blood mononuclear cells (PBMCs) in patients with CFS.

METHODS: Fluorescent quantitative real time reverse-transcription polymerase chain reaction (FQ-RT-PCR) was performed to test TGF-β1 mRNA expression in PBMCs in 63 cases of CFS, 50 cases of disease controls, and 50 cases of healthy controls.

RESULTS: The mean value of TGF-β1 mRNA expression in CFS patients was ΔΔCt=1.17±0.58, which was significantly higher than the disease controls (ΔΔCt=0.07±1.08, df=111, p < 0.01) and the healthy controls (ΔΔCt=0.00±1.63, df=111, p < 0.01). No significant difference was detected between disease and healthy controls (p > 0.05).

CONCLUSION: The expression of TGF-β1 in PBMCs is significantly elevated in patients with CFS. It might be correlated to the pathogenesis of the disease.

Source: Zhang HY, Liu ZD, Hu CJ, Wang DX, Zhang YB, Li YZ. Up-regulation of TGF-β1 mRNA expression in peripheral blood mononuclear cells of patients with chronic fatigue syndrome. J Formos Med Assoc. 2011 Nov;110(11):701-4. doi: 10.1016/j.jfma.2011.09.006. Epub 2011 Oct 22. http://www.jfma-online.com/article/S0929-6646(11)00070-2/fulltext (Full article)

Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome

Abstract:

In complex multisymptom disorders like fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) that are defined primarily by subjective symptoms, genetic and gene expression profiles can provide very useful objective information.

This paper summarizes research on genes that may be linked to increased susceptibility in developing and maintaining these disorders, and research on resting and stressor-evoked changes in leukocyte gene expression, highlighting physiological pathways linked to stress and distress. These include the adrenergic nervous system, the hypothalamic-pituitary-adrenal axis and serotonergic pathways, and exercise responsive metabolite-detecting ion channels.

The findings to date provide some support for both inherited susceptibility and/or physiological dysregulation in all three systems, particularly for catechol-O-methyl transferase (COMT) genes, the glucocorticoid and the related mineralocorticoid receptors (NR3C1, NR3C2), and the purinergic 2X4 (P2X4) ion channel involved as a sensory receptor for muscle pain and fatigue and also in upregulation of spinal microglia in chronic pain models. Methodological concerns for future research, including potential influences of comorbid clinical depression and antidepressants and other medications, on gene expression are also addressed.

Source: Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome. Pain Res Treat. 2012;2012:427869. doi: 10.1155/2012/427869. Epub 2011 Sep 29. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200121/ (Full article)

Factor analysis of the Beck Depression Inventory-II with patients with chronic fatigue syndrome

Abstract:

This study examined the properties of the Beck Depression Inventory-II (BDI-II) in a sample of 111 patients with chronic fatigue syndrome (CFS). Exploratory factor analysis identified two factors. The mean score for the Somatic-Affective factor was significantly higher than the Cognitive factor. Convergent and discriminant validity were assessed for BDI-II total score, the two factor scores, and the BDI for Primary Care (BDI-PC). The BDI-PC and Cognitive factor demonstrated superior validity. Results suggest patients endorse BDI-II somatic items that overlap with CFS symptoms at a high rate. Factor scores should be evaluated separately, or the BDI-PC should be utilized with this population.

Source: Brown M, Kaplan C, Jason L. Factor analysis of the Beck Depression Inventory-II with patients with chronic fatigue syndrome. J Health Psychol. 2012 Sep;17(6):799-808. doi: 10.1177/1359105311424470. Epub 2011 Nov 21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3655435/ (Full article)

Kynurenine pathway Hypothesis: The nature of the chronic Fatigue syndrome (cFs) Revisited

Moderate physicians consider CFS to be missed diagnoses of uncommon illnesses with atypical features. Hartnup (heterozygotes), Lyme and Whipples—like diseases are examples of conditions which fit these clinical ambiguities. The detractors claim it is non-existent. The protractors complain CFS is excluded from standard medical texts. A broad overview of medical literature and support group newsletters, render these opposing views substantially incorrect.

The patient presents with a confounding array of neurological, mental, gastrointestinal, musculoskeletal and perhaps dermatological and visual signs and symptoms. Episodic night sweats can also be reported. Lack of energy, concentration and mobility, limit lifestyle. These symptom constellations evolve and fluctuate in a seemingly random order and can become entrenched. Alcohol intake, protracted steroid therapy and overt or latent infections usually aggravate the course of CFS.

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195222/

Source: Blankfield A. Kynurenine pathway Hypothesis: The nature of the Chronic Fatigue Syndrome (CFS) Revisited. Int J Tryptophan Res. 2011;4:47-8. doi: 10.4137/IJTR.S7898. Epub 2011 Jul 31. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195222/ (Full article)

What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Abstract:

BACKGROUND: Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and disabling with a mean time out of school of more than one academic year. NICE guidelines recommend referral to specialist services immediately if severely affected, within 3 months if moderately affected and within 6 months if mildly affected. However, the median time-to-assessment by a specialist service in the UK is 18 months. This study used a mixed-methods approach to examine factors associated with time taken to access specialist services.

METHODS: Time-to-assessment was analysed as a continuous “survival-time” variable in Cox regression models using data from self-completed assessment forms for children attending a regional specialist CFS/ME service between January 2006 and December 2009. Semi-structured interviews about barriers experienced in accessing healthcare for their child were conducted with nine parents of children aged < 17 years (8 individual and one parent couple). Interviews were digitally recorded and analysed using “thematic analysis”.

RESULTS: 405 children were assessed between 2006 and 2009 and information on school attendance was available on 388. Only 1/125 with severe CFS/ME and 49/263 (19%) with mild to moderate CFS/ME were seen within NICE recommended timeframe. Increased fatigue was associated with shorter time to assessment (HR = 1.15; 95% CI 1.03, 1.29 per unit increase in Chalder fatigue score; P = 0.01). Time-to-assessment was not associated with disability, mood, age or gender. Parents described difficulties accessing specialist services because of their own as well as their GP’s and Paediatrician’s lack of knowledge. They experienced negative attitudes and beliefs towards the child’s condition when they consulted GPs, Paediatricians and Child Psychiatrists. Parents struggled to communicate an invisible illness that their child and not themselves were experiencing.

CONCLUSIONS: GPs, Child Psychiatrists and Paediatricians need more knowledge about CFS/ME and the appropriate referral pathways to ensure timeliness in referral to specialist services.

Source: Webb CM, Collin SM, Deave T, Haig-Ferguson A, Spatz A, Crawley E. What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). BMC Health Serv Res. 2011 Nov 11;11:308. doi: 10.1186/1472-6963-11-308. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228771/ (Full article)

Treating chronic fatigue syndrome – a study into the scientific evidence for pharmacological treatments

Abstract:

BACKGROUND: Chronic fatigue syndrome, or myalgic encephalomyelitis (CFS), is a severe disabling condition. Patients with CFS usually trial many different medicines, both conventional and complementary. An overview of the pharmacological treatments used by CFS patients and the available evidence underpinning the use of these treatments would be of great value to both patients and their healthcare providers.

METHODS: Ninety-four CFS patients recruited into an Australian study investigating immunological biomarkers filled out a questionnaire assessing the medicines they were taking. Evidence from randomised clinical trials was sought in biomedical databases.

RESULTS: The 94 CFS patients used 474 different medicines and supplements. The most commonly used medicines were antidepressants, analgesics, sedatives, and B vitamins. We identified 20 randomised controlled trials studying these medicines in CFS patients.

DISCUSSION: While conventional and complementary medicines are widely used by CFS patients, the evidence for effectiveness in CFS is very limited.

Source: Kreijkamp-Kaspers S, Brenu EW, Marshall S, Staines D, Van Driel ML. Treating chronic fatigue syndrome – a study into the scientific evidence for pharmacological treatments. Aust Fam Physician. 2011 Nov;40(11):907-12. http://www.racgp.org.au/download/documents/AFP/2011/November/201111kkaspers.pdf (Full article)

The common immunogenic etiology of chronic fatigue syndrome: from infections to vaccines via adjuvants to the ASIA syndrome

Abstract:

Chronic fatigue syndrome (CFS) is characterized by unexplained fatigue that lasts for at least 6 months with a constellation of other symptoms. Most cases start suddenly, and are usually accompanied by a flu-like illness. It is a symptom-based diagnosis of exclusion, the pathogenesis of which is unknown. Studies have examined and hypothesized about the possible biomedical and epidemiologic characteristics of the disease, including genetic predisposition, infections, endocrine abnormalities, and immune dysfunction and psychological and psychosocial factors. Recently, the AISA (autoimmune/inflammatory syndrome induced by adjuvants) syndrome was recognized, indicating the possible contribution of adjuvants and vaccines to the development of autoimmunity.

Source: Rosenblum H, Shoenfeld Y, Amital H. The common immunogenic etiology of chronic fatigue syndrome: from infections to vaccines via adjuvants to the ASIA syndrome. Infect Dis Clin North Am. 2011 Dec;25(4):851-63. doi: 10.1016/j.idc.2011.07.012. Epub 2011 Sep 9. https://www.ncbi.nlm.nih.gov/pubmed/22054760

Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

BACKGROUND: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.

METHODS: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis.

FINDINGS: Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care.

CONCLUSIONS: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.

Source: de Carvalho Leite JC1, de L Drachler M, Killett A, Kale S, Nacul L, McArthur M, Hong CS, O’Driscoll L, Pheby D, Campion P, Lacerda E, Poland F. Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. Int J Equity Health. 2011 Nov 2;10:46. doi: 10.1186/1475-9276-10-46. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229491/ (Full article)