A concurrent cognitive task does not perturb (i.e. alter) quiet standing in FM & CFS/ME

Posted on 09/26/2018 by wames

A Concurrent Cognitive Task Does Not Perturb Quiet Standing in Fibromyalgia and Chronic Fatigue Syndrome, by Omid Rasouli, Egil A Fors, Ottar Vasseljen and Ann-Katrin Stensdotter in Pain Research and Management Vol 2018, Article ID 9014232 [Published 7 August 2018]

Research abstract:

Background and Objectives:

Cognitive complaints are common in fibromyalgia (FM) and chronic fatigue syndrome (CFS). Fatigue as well as pain may require greater effort to perform cognitive tasks, thereby increasing the load on processing in the central nervous system and interfering with motor control.

Methods:

The effect of a concurrent arithmetic cognitive task on postural control during quiet standing was investigated in 75 women (aged 19–49 years) and compared between FM, CFS, and matched controls (/group). Quiet standing on a force plate was performed for 60 s/condition, with and without a concurrent cognitive task. The center of pressure data was decomposed into a slow component and a fast component representing postural sway and adjusting ankle torque.

Results:

Compared to controls, CFS and FM displayed lower frequency in the slow component (), and CFS displayed greater amplitude in the slow ( and ) and fast () components. There were no interactions indicating different responses to the added cognitive task between any of the three groups.

Conclusion:

Patients displayed insufficient postural control across both conditions, while the concurrent cognitive task did not perturb quiet standing. Fatigue but not pain correlated with postural control variables.

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Defining the prevalence & symptom burden of those with self-reported severe CFS/ME

Posted on 09/24/2018 by wames

Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A two-phase community pilot study in the North East of England, by Victoria Jane Strassheim,  Madison Sunnquist, Leonard A Jason, Julia L Newton in BMJ Open Vol 19, #8, p e020775 [Published: September 19, 2018]

Research abstract:

Objectives:
To define the prevalence of severe chronic fatigue syndrome/ myalgic  encephalomyelitis (CFS/ME) and its clinical characteristics in a geographically defined area of Northern England. To understand the feasibility of a community-based research study in the severely affected CFS/ME group.

Design:
A two-phase clinical cohort study to pilot a series of investigations in participants own homes.

Setting:
Participants were community living from the area defined by the Northern clinical network of the UK.

Participants:
Adults with either a medical or a self-reported diagnosis of CFS/ME.

Phase 1 involved the creation of a database.

Phase 2: five participants were selected from database, dependent on their proximity to Newcastle.

Interventions:
The De Paul fatigue questionnaire itemised symptoms of CFS/ME, the Barthel Functional Outcome Measure and demographic questions were collected via postal return. For phase 2, five participants were subsequently invited to participate in the pilot study.

Results: 
483 questionnaire packs were requested, 63 were returned in various stages of completion. 56 De Paul fatigue questionnaires were returned: all but 12 met one of the CFS/ME criteria, but 12 or 22% of individuals did not fulfil the Fukuda nor the Clinical Canadian Criteria CFS/ME diagnostic criteria but 6 of them indicated that their fatigue was related to other causes and they barely had any symptoms. The five pilot participants completed 60% of the planned visits.

Conclusions:
Severely affected CFS/ME individuals are keen to participate in research, however, their symptom burden is great and quality of life is poor. These factors must be considered when planning research and methods of engaging with such a cohort.

Strengths and limitations of this study

  • Two-phase pilot study with severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) individuals in the community, to understand the feasibility of engaging those with severe CFS/ME with research.
  • Phase 1 consisted of postal questionnaires including demographic data, Barthel Functional Outcome Score and De Paul fatigue questionnaire.
  • Effort was taken to engage with this severely symptom burdened group in their own environment.
  • The postal questionnaires sent to return ratio was poor; feedback from the local support group suggests in part due to the severity of impairment experienced by this group of individuals.
  • This pilot study can only give an indication of possible people with severe CFS/ME presentation in a specific, geographically defined area.
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Near-infrared spectroscopy screening to allow detection of pathogenic mitochondrial DNA variants in individuals with unexplained abnormal fatigue

Posted on 09/21/2018 by wames

Near-infrared spectroscopy screening to allow detection of pathogenic mitochondrial DNA variants in individuals with unexplained abnormal fatigue: A preliminary study, by Bert M Celie, An Mariman, Jan Boone, Liesbeth Delesie, Els Tobback, Sara Seneca, Boel De Paepe, Dirk Vogelaers, Rudy N Van Coster, Jan G Bourgois in Appl Spectrosc. 2018 May; 72(5):715-724 [Epub 2018 Feb 13]

Research abstract:

Unexplained abnormal fatigue is characterized by chronic fatigue persisting for at least six months and not sufficiently explained by any recognized medical condition.

In this pilot study, twelve individuals with abnormal fatigue remaining unexplained after thorough screening were investigated using a near-infrared (NIR) spectroscopy handgrip test.

Four of them were found to have an abnormal oxygen extraction pattern similar to participants with documented mitochondrial myopathy. In three of the four individuals, diverse mitochondrial abnormalities were documented by spectrophotometric, immunocytological, fluorescent, and morphological analyses performed in skeletal muscle and in cultured skin fibroblasts.

Three of the four participants with decreased muscular oxygen extraction were each shown to harbor a different homoplasmic pathogenic mitochondrial DNA point mutation (m.961T > C, m.1555A > G, m.14484T > C). In the fourth participant, the presence of multiple large mitochondrial DNA deletions was suspected in muscle tissue.

In contrast, none of the eight abnormally fatigued participants with normal NIR spectroscopy results harbored either a pathogenic mitochondrial DNA point mutation or large deletions ( P < 0.001).

This pilot study shows that NIR spectroscopy may serve as a noninvasive screening tool to delineate a subgroup (of participants) with mitochondrial dysfunction among the large group of individuals with unexplained abnormal fatigue.

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Unraveling the molecular determinants of manual therapy: an approach to integrative therapeutics for the treatment of FM &CFS

Posted on 09/19/2018 by wames

Unraveling the molecular determinants of manual therapy: an approach to integrative therapeutics for the treatment of Fibromyalgia and Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, by José Andrés Espejo, María García-Escudero, andElisa Oltra in Open AccessInt. J. Mol. Sci. 2018, 19(9), 2673 [Published: 9 September 2018]

Review abstract:

Application of protocols without parameter standardization and appropriate controls has led manual therapy (MT) and other physiotherapy-based approaches to controversial outcomes.

Thus, there is an urgency to carefully define standard protocols that elevate physiotherapy treatments to rigorous scientific demands. One way in which this can be achieved is by studying gene expression and physiological changes that associate to particular, parameter-controlled, treatments in animal models, and translating this knowledge to properly designed, objective, quantitatively-monitored clinical trials (CTs).

Here, we propose a molecular physiotherapy approach (MPTA) requiring multidisciplinary teams, to uncover the scientific reasons behind the numerous reports that historically attribute health benefits to MT-treatments.

The review focuses on the identification of MT-induced physiological and molecular responses that could be used for the treatment of fibromyalgia (FM) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The systemic effects associated to mechanical-load responses are considered of particular relevance, as they suggest that defined, low-pain anatomic areas can be selected for MT treatment and yet yield overall benefits, an aspect that might result in it being essential to treat FM.

Additionally, MT can provide muscle conditioning to sedentary patients without demanding strenuous physical effort, which is particularly detrimental for CFS/ME patients, placing MT as a real option for integrative medicine programs to improve FM and CFS/ME.

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Videos: Prof Peter Rowe & Dr Nigel Speight, discuss paediatric ME/CFS

Posted on 09/18/2018 by wames

Paediatric ME/CFS (from Voices from shadows website) 

Two world renown ME/CFS paediatricians, Prof Peter Rowe and Dr Nigel Speight, discuss paediatric ME/CFS diagnosis and management in two short videos for medical professionals, following publication of the comprehensive manual Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer  published in Frontiers 2017.

Peter Rowe MD is a Professor of Paediatrics and is Director of the Children’s Center Chronic Fatigue Clinic at the Johns Hopkins University School of Medicine, Baltimore, USA. His areas of clinical expertise include chronic fatigue syndrome, fibromyalgia and orthostatic intolerance. Prof Peter Rowe played a  major role in the production of  the recent  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He was also a member of the team which produced the very influential report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Published in 2015 by the National Academy of Medicine, USA, it includes diagnostic criteria, a clinicians guide and a comprehensive literature review.

Dr Nigel Speight is a  consultant Paediatrician with a long standing special interest in ME, based in Durham, UK. He is a medical advisor for several charities including the ME Association, The Young ME Sufferers Trust and the 25% ME Group. Dr Speight  was among the expert ME/CFS paediatricians contributing to Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He previously contributed to the “Myalgic Encephalomyelitis International Consensus Criteria” and it’s related “Primer’ for Medical Practitioners. 2011 He served on the Chief Medical Officer’s Working Party on ME 2002 and also the College of Paediatrics and Child Health Guidelines Group 2004.

Part 1. Diagnosis of paediatric ME/CFS with Dr Nigel Speight and Prof Peter Rowe

Part 2. Severe ME/CFS and management of paediatric  ME/CFS

Watch videos & find more links to resources

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Chinese CFS patients have alterations in their oral microbiome composition & function

Posted on 09/14/2018 by wames

Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function by Taiwu Wang , Lei Yu , Cong Xu, Keli Pan, Minglu Mo, Mingxiang Duan, Yao Zhang , Hongyan Xiong  in PLoS One. 2018 Sep 11;13(9)

Research abstract:

Host-microbe interactions have been implicated in the pathogenesis of chronic fatigue syndrome (CFS), but whether the oral microbiome is altered in CFS patients is unknown.

We explored alterations of the oral microbiome in Chinese Han CFS patients using 16S rRNA gene sequencing and alterations in the functional potential of the oral microbiome using PICRUSt. We found that Shannon and Simpson diversity indices were not different in CFS patients compared to healthy controls, but the overall oral microbiome composition was different (MANOVA, p < 0.01).

CFS patients had a higher relative abundance of Fusobacteria compared with healthy controls. Further, the genera Leptotrichia, Prevotella, and Fusobacterium were enriched and Haemophilus, Veillonella, and Porphyromonas were depleted in CFS patients compared to healthy controls. Functional analysis from inferred metagenomes showed that bacterial genera altered in CFS patients were primarily associated with amino acid and energy metabolism.

Our findings demonstrate that the oral microbiome in CFS patients is different from healthy controls, and these differences lead to shifts in functional pathways with implications for CFS pathogenesis. These findings increase our understanding of the relationship between the oral microbiota and CFS, which will advance our understanding of CFS pathogenesis and may contribute to future improvements in treatment and diagnosis.

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Confirmatory factor analysis of a ME & CFS stigma scale

Posted on 09/13/2018 by wames

Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale, by Julia M Terman, Jessica M Awsumb, Joseph Cotler, Leonard A Jason in Journal of Health Psychology, September 2018 [Published online: September 5, 2018]

Research 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.

Read full article

Extract from conclusion:

In summary, the newly confirmed ME and CFS Stigma Scale demonstrated high levels of
stigma and related variables for people with the illness. Stigma may serve as a risk factor for a variety of social and health problems (Clement et al., 2015; Hutton et al., 2013; Looper and Kirmayer, 2004; Sehlo and Bahlas, 2013).

This article’s findings bring attention to the high levels of perceived stigma in ME and CFS.
Healthcare professionals, co-workers, friends, and family members need to work together to decrease the stigmatization of patients with ME and CFS. On a structural level, educational interventions can be implemented to decrease physician stigma. These interventions may involve seminars with factual information and videotaped cases, as such interventions have demonstrated effectiveness in improving attitudes toward ME and CFS (Friedberg et al., 2008).

Peer-led approaches may be most successful at combatting stigma, so interventions may emphasize the importance of participant research and bringing in guests with lived experience (Murman et al., 2014).

In addition to developing a consensus on the name and research case definition, which would reduce some of the ambiguity that professionals have with ME and CFS (Jason et al., 2018), there is also a need to develop treatment interventions that are not stigmatizing to patients, such as pacing and learning to stay within one’s energy envelope (Jason et al., 2013). On an interpersonal level, individuals can focus on active listening when people disclose challenges with ME and CFS. As demonstrated through the DPM, positive disclosure experiences may have profound effects in a patient’s future experiences.

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Using the internet to cope with CFS/ME in adolescence

Posted on 09/12/2018 by wames

Using the internet to cope with chronic fatigue syndrome/ myalgic encephalomyelitis in adolescence: a qualitative study, by Amberly Brigden, Julie Barnett, Roxanne Morin Parslow, Lucy Beasant, Esther Crawley in BMJ Paediatrics Open Vol. 2, #1 [Published: August 23, 2018]

Background:

Adolescents are increasingly using online resources for health purposes. Previous studies suggest that online provision of information about chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is neither balanced nor consistent with evidence-based practice. However, little is known about how adolescents with CFS/ME use the internet for
their condition and whether this is helpful or harmful.

Methods:
Nine indepth, semistructured, qualitative interviews were conducted with young people (aged 12-17) recruited from a specialist paediatric CFS/ME service. Interviews explored the types of online resources accessed, motivations for doing so and how resource use related to patterns of coping.

Results:
Around the time of diagnosis, participants focused on gathering facts about CFS/ME and therefore used official resources (eg, National Health Service sites) that were considered reliable. This transitioned to exploring patient-led and peer-led spaces: health forums, Facebook and YouTube. Participants accessed these regularly, over the long term, and
valued these sites for the personal stories, emotional content and interactive technology. Patient-led and peer-led sites supported coping, encouraging active behavioural management, providing social support and addressing stigmatised aspects of the condition. CFS/ME put a strain on normal adolescent life, such as identity and friendships.  Online resources allowed participants to adapt and maintain a sense of
normality.

Conclusions:
Adolescents who use the internet find online resources helpful in seeking information and social support for their condition. Healthcare services should improve their online resources to meet the needs of younger users, providing evidence-based content in ways that are relevant to adolescents and that can meet the needs for social support, as well as providing information.

What is already known on this topic?

  • Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is relatively common and disabling, with significant impact on the individual, family and health services.
  • Adolescents are increasingly going online for health purposes. Online resources can be beneficial in  providing social support. However, disadvantages include  misleading or inaccurate medical information.
  • Previous studies suggest that online provision of information about CFS/ME is neither balanced nor consistent with evidence-based practice.

What this study hopes to add?

  • Participants initially focused on official resources (eg, National  Health  Service  sites) for fact-finding.  This  transitioned to patient/peer -led,  which were accessed regularly and over the long-term.
  • Patient-led/peer-led sites supported coping; they encouraged active behavioural management, provided social support, addressed stigmatised aspects of the condition and helped maintain normal adolescent life.
  • Feeling connected to other adolescents with the condition was important, and online forums addressed this need; accessing such forums complemented treatment with specialist CFS/ME services.
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Passive standing tests for the office diagnosis of postural tachycardia syndrome: New methodological considerations

Posted on 09/12/2018 by wames

Passive standing tests for the office diagnosis of postural tachycardia syndrome: new methodological considerations, by Maria Roma, Colleen L. Marden & Peter C. Rowe in Fatigue: Biomedicine, Health & Behavior 2018 [Published online: 25 Aug 2018]

Research abstract:

Background: Passive standing tests are a first-line, practical means of assessing individuals with chronic orthostatic symptoms.

Purpose: To identify the proportion reaching heart rate (HR) criteria for postural tachycardia syndrome (POTS) during a 10-minute passive standing test (PST) if measurement of the lowest supine HR incorporated a 2-minute period of post-test monitoring, rather than being restricted to the 5-minute pre-test values only, and to determine the proportion whose POTS would be missed by shorter periods upright.

Methods: Consecutive individuals ≥ 12 years from 2008 to 2017 who presented with chronic fatigue or lightheadedness and whose PST met criteria for POTS.

Results: Of the 93 enrolled (70% female, median age 17 years), the mean (SD) HR was higher in the 5 min supine before the 10 min upright than in the 2 min supine afterwards (67.6 [10.0] vs. 65.7 [10.9]; P = 0.01). Thirteen (14%; 95% CI, 7–21%) satisfied HR criteria for POTS using the supine HR from only the post-test period. The median time to reaching the HR criteria for POTS was 3 min. Of those reaching HR criteria, 53% (95% CI, 43–63%) would be missed by a 2-minute and 27% (95% CI, 19–37%) by a 5-minute test.

Interpretation: More adolescents and young adults are diagnosed with POTS during a 10-minute PST when the definition of their lowest supine HR includes a 2-minute post-test measurement along with the conventional pre-test measure. A full 10 min of standing is required to avoid underdiagnosing POTS in both clinical and epidemiologic studies.

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Operationalizing substantial reduction in functioning among young adults with CFS

Posted on 09/11/2018 by wames

Research abstract:

Operationalizing Substantial Reduction in Functioning Among Young Adults with Chronic Fatigue Syndrome, by Kristen D. Gleason, Jamie Stoothoff, Damani McClellan, Sttephanie McManimen, Taylor Thorpe, Ben Z. Katz, Leonard A. Jason in International Journal of Behavioral Medicine 2018 pp1-8 [Published online 5 June 2018]

Purpose:
Chronic fatigue syndrome and myalgic encephalomyelitis are fatiguing illnesses that often result in long-term impairment in daily functioning. In reviewing case definitions, Thrope et al. (Fatigue 4(3):175–188, 2016) noted that the vast majority of case definitions used to describe these illnesses list a “substantial reduction” in activities as a required feature for diagnosis. However, there is no consensus on how to best operationalize the criterion of substantial reduction.

operationalization is a process of defining the measurement of a phenomenon that is not directly measurable, though its existence is indicated by other phenomena. Operationalization is thus the process of defining a fuzzy concept so as to make it clearly distinguishable, measurable, and understandable in terms of empirical observations.                                     [Wikipedia]

Method:
The present study used a series of receiver operating curve (ROC) analyses to explore the use of the Medical Outcomes Study Short-Form-36 Health Survey (SF-36), designed by Ware and Shelbourne for operationalizing the substantial reduction criterion in a young adult population (18–29 years old). We compared the sensitivity and specificity of various cutoff scores for the SF-36 subscales and assessed their usefulness in discriminating between a group of young adults with a known diagnosis of chronic fatigue syndrome or myalgic encephalomyelitis (n = 98) versus those without that diagnosis (n = 272).

Results:
The four top performing subscales and their associated cutoffs were determined: Physical Functioning ≤ 80, General Health ≤ 47, Role Physical ≤ 25, and Social Functioning ≤ 50. Used in combination, these four cutoff scores were shown to reliably discriminate between the patients and controls in our sample of young adults.

Conclusion:
The implications of these findings for employing the substantial reduction criterion in both clinical and research settings are discussed.

Read full paper

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