A Concurrent Cognitive Task Does Not Perturb Quiet Standing in Fibromyalgia and Chronic Fatigue Syndrome

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 (n=25/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 (p < 0.001), and CFS displayed greater amplitude in the slow (p=0.038 and p=0.018) and fast (p=0.045) 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.

Source: Rasouli O, Fors EA, Vasseljen O, Stensdotter AK. A Concurrent Cognitive Task Does Not Perturb Quiet Standing in Fibromyalgia and Chronic Fatigue Syndrome. Pain Res Manag. 2018 Aug 7;2018:9014232. doi: 10.1155/2018/9014232. eCollection 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6109464/ (Full article)

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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Take Action! Demand Congress Create a Federal ME/CFS Advisory Committee

From Solve ME/CFS Initiative

On September 6, the Secretary of Health and Human Services disbanded the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) by allowing the charter for the committee to expire after 16 years.

The Chronic Fatigue Syndrome Advisory Committee was the only voice exclusively for the ME/CFS community in the federal government. We cannot allow the administration to silence people with ME/CFS, their loved ones, scientists, and advocates.

Join Solve ME/CFS Initiative in calling on congress to establish a new ME/CFS Federal Advisory Committee – through congressional action – to ensure that our community will be heard!

Please click HERE to add your name.

Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study

Abstract:

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.

Source: Brigden A, Barnett J, Parslow RM, Beasant L, Crawley E. Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study. BMJ Paediatr Open. 2018 Aug 23;2(1):e000299. doi: 10.1136/bmjpo-2018-000299. eCollection 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6109806/ (Full article)

Second Annual COMMUNITY SYMPOSIUM at Stanford University

From Open Medicine Foundation

We are pleased to announce the speakers for the Second Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University sponsored by Open Medicine Foundation on Saturday, September 29.

The following researchers will be presenting: Ronald W. Davis, PhD, Maureen Hanson, PhD, Jonas Bergquist, MD, PhD, Wenzhong Xiao, PhD, Alain Moreau, PhD, Ronald G. Tompkins, MD, ScD, Jarred Younger, PhD, Oystein Fluge, MD, PhD, and Michael Sikora.

The Symposium will be live-streamed for free. Pre-registration is required.

Register today to watch the program via Livestream.

The event will begin at 9:00 AM Pacific Time and will conclude at 5:00 PM Pacific Time. Patients, parents, researchers, clinicians, family and friends are invited to register to watch all or part of the program from anywhere in the world. (Recordings will be available after the event too.)

Please register to watch the program via Livestream.

Please tell a friend – forward this announcement to share this unique experience with our worldwide community.

If you are able to join us in-person for the Symposium, please reserve your spot and register now.

For additional event details, please visit our website.

Living with ME/CFS: Robie’s Story | ME/CFS Alert Episode 99

Llewellyn King interviews 42-year-old Robie Robataille. In this video Robie talks about her difficulty in getting a diagnosis and her gradual decline to the way she lives now: She takes a couple of hours to wake in morning and can only stomach a shake made by her parents.

She speaks frankly about the loneliness of the disease, and how her two dogs and two cats mean so much to her; where one would long for human touch, she has only the caress of her animals. Robie tells the story of her decline over 15 years to a point, four years ago, when she had to abandon her home and life in Texas to be taken care of by her parents in Wrentham, MA.

A new approach to find biomarkers in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) by single-cell Raman micro-spectroscopy

Abstract:

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME), is a debilitating disorder characterized by physical and mental exhaustion. Mitochondrial and energetic dysfunction has been investigated in CFS patients due to a hallmark relationship with fatigue, however, no consistent conclusion has yet been achieved.

Single-cell Raman spectra (SCRS) are label-free biochemical profiles, indicating phenotypic fingerprints of single cells. In this study, we applied a new approach using single-cell Raman microspectroscopy (SCRM) to examine 0 cells that lack mitochondrial DNA (mtDNA), and peripheral blood mononuclear cells (PBMCs) from CFS patients and healthy controls.

The experimental results show that Raman bands associated with phenylalanine in 0 cells and CFS patient PBMCs were significantly higher than wild type model and healthy controls. Remarkably, an increase in intensities of Raman phenylalanine bands were also observed in CFS patients. As similar changes were observed in the 0 cell model with a known deficiency in the mitochondrial respiratory chain as well as in CFS patients, our results suggest that the increase in cellular phenylalanine may relate to mitochondrial/energetic dysfunction in both systems.

Interestingly, phenylalanine can be used as a potential biomarker for diagnosis of CFS by SCRM. A machine learning classification model achieved an accuracy rate of 98% correctly assigning Raman spectra to either the CFS group or the control group. SCRM combined with machine learning algorithm therefore has the potential to become a diagnostic tool for CFS.

Source: Jiabao Xu, Michelle Potter, Cara Tomas, Jo Elson, Karl Morten, Joanna Poulton, Ning Wang, Hanqing Jin, Zhaoxu Hou and Wei Huang. A new approach to find biomarkers in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) by single-cell Raman micro-spectroscopy. Analyst, 22 Aug 2018.  http://pubs.rsc.org/en/Content/ArticleLanding/2018/AN/C8AN01437J#!divAbstract

Visual Aspects of Reading Performance in Myalgic Encephalomyelitis (ME)

People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) report vision-related reading difficulty, although this has not been demonstrated objectively. Accordingly, we assessed reading speed and acuity, including crowded acuity and acuity for isolated words using standardized tests of reading and vision, in 27 ME/CFS patients and matched controls. We found that the ME/CFS group exhibited slower maximum reading speed, and had poorer crowded acuity than controls. Moreover, crowded acuity was significantly associated with maximum reading speed, indicating that patients who were more susceptible to visual crowding read more slowly. These findings suggest vision-related reading difficulty belongs to a class of measureable symptoms for ME/CFS patients.

Source: Rachel L. Wilson, Kevin B. Paterson, Victoria McGowan and Claire V. Hutchinson. Visual Aspects of Reading Performance in Myalgic Encephalomyelitis (ME). Front. Psychol., 17 August 2018 https://doi.org/10.3389/fpsyg.2018.01468 (Full article)

Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients

Abstract:

BACKGROUND: Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME) is a debilitating disorder that is accompanied by reduced cytotoxic activity in natural killer (NK) cells. NK cells are an essential innate immune cell, responsible for recognising and inducing apoptosis of tumour and virus infected cells. Calcium is an essential component in mediating this cellular function. Transient Receptor Potential Melastatin 3 (TRPM3) cation channels have an important regulatory role in mediating calcium influx to help maintain cellular homeostasis. Several single nucleotide polymorphisms have been reported in TRPM3 genes from isolated peripheral blood mononuclear cells, NK and B cells in patients with CFS/ME and have been proposed to correlate with illness presentation. Moreover, a significant reduction in both TRPM3 surface expression and intracellular calcium mobilisation in NK cells has been found in CFS/ME patients compared with healthy controls. Despite the functional importance of TRPM3, little is known about the ion channel function in NK cells and the epiphenomenon of CFS/ME. The objective of the present study was to characterise the TRPM3 ion channel function in NK cells from CFS/ME patients in comparison with healthy controls using whole cell patch-clamp techniques.

METHODS: NK cells were isolated from 12 age- and sex-matched healthy controls and CFS patients. Whole cell electrophysiology recording has been used to assess TRPM3 ion channel activity after modulation with pregnenolone sulfate and ononetin.

RESULTS: We report a significant reduction in amplitude of TRPM3 current after pregnenolone sulfate stimulation in isolated NK cells from CFS/ME patients compared with healthy controls. In addition, we found pregnenolone sulfate-evoked ionic currents through TRPM3 channels were significantly modulated by ononetin in isolated NK cells from healthy controls compared with CFS/ME patients.

CONCLUSIONS: TRPM3 activity is impaired in CFS/ME patients suggesting changes in intracellular Ca2+ concentration, which may impact NK cellular functions. This investigation further helps to understand the intracellular-mediated roles in NK cells and confirm the potential role of TRPM3 ion channels in the aetiology and pathomechanism of CFS/ME.

Source: Cabanas H, Muraki K, Eaton N, Balinas C, Staines D, Marshall-Gradisnik S. Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. Mol Med. 2018 Aug 14;24(1):44. doi: 10.1186/s10020-018-0046-1.

Chronic fatigue syndrome and quality of life

Abstract:

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient’s perspective. One indicator of impact can be gained by measuring quality of life (QoL). By applying a patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned. Such a tool can act therapeutically tool to promote holistic and individualized professional interventions and interval measurement can inform commissioning of specialist services.

Standard practice appears not fully to capture the experience of CFS, while a search of the literature turned up QoL patient-reported outcome tools, but failed to reveal a CFS/ME-specific measure. The author explores a valid and reliable PROM that can monitor change and evaluate the UK National Institute of Clinical Excellence rehabilitation program, as delivered by specialist National Health Service units. An alternative, the World Health Organization’s quality-of life instrument (WHOQoL)-Bref26, is reviewed for relevance to the condition, measuring treatment outcomes and the wider debate of measuring QoL in LTCs.

Source: Roberts D. Chronic fatigue syndrome and quality of life. Patient Relat Outcome Meas. 2018 Aug 1;9:253-262. doi: 10.2147/PROM.S155642. eCollection 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6078083/ (Full article)