Cellular bioenergetics is impaired in patients with CFS

Research abstract:

Cellular bioenergetics is impaired in patients with chronic fatigue syndrome, by Cara Tomas, Audrey Brown, Victoria Strassheim, Joanna Elson, Julia Newton, Philip Manning in PLOSone [Published: October 24, 2017]

Chronic fatigue syndrome (CFS) is a highly debilitating disease of unknown aetiology. Abnormalities in bioenergetic function have been cited as one possible cause for CFS. Preliminary studies were performed to investigate cellular bioenergetic abnormalities in CFS patients. A series of assays were conducted using peripheral blood mononuclear cells (PBMCs) from CFS patients and healthy controls.

These experiments investigated cellular patterns in oxidative phosphorylation (OXPHOS) and glycolysis. Results showed consistently lower measures of OXPHOS parameters in PBMCs taken from CFS patients compared with healthy controls.

Seven key parameters of OXPHOS were calculated: basal respiration, ATP production, proton leak, maximal respiration, reserve capacity, non-mitochondrial respiration, and coupling efficiency.

While many of the parameters differed between the CFS and control cohorts, maximal respiration was determined to be the key parameter in mitochondrial function to differ between CFS and control PBMCs due to the consistency of its impairment in CFS patients found throughout the study (p≤0.003).

The lower maximal respiration in CFS PBMCs suggests that when the cells experience physiological stress they are less able to elevate their respiration rate to compensate for the increase in stress and are unable to fulfil cellular energy demands. The metabolic differences discovered highlight the inability of CFS patient PBMCs to fulfil cellular energetic demands both under basal conditions and when mitochondria are stressed during periods of high metabolic demand.

Health rising: Cellular Energy Production Takes Big Hit in Chronic Fatigue Syndrome (ME/CFS) Study

New Scientist: Blood cells in chronic fatigue syndrome are drained of energy

Science alert blog post, by Mike McRae, 7 Nov 2017: People With Chronic Fatigue Syndrome Are Exhausted at a Cellular Level, Study Shows

ME Association: We hear from Cara Tomas about her about her recent study on cellular bioenergetics deficiencies in ME/CFS

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Grey and white brain matter differences in CFS

Research abstract:

Grey and white matter differences in Chronic Fatigue Syndrome – a voxel-based morphometry study, by Andreas Finkelmeyer, Jiabao He, Laura Maclachlan, Stuart Watson, Peter Gallagher, Julia L. Newton, Andrew M. Blamire in NeuroImage: Clinical, Volume 17, 2018, Pages 24-30 [Preprint Available online 28 September 2017]

Objective:
Investigate global and regional grey and white matter volumes in patients with Chronic Fatigue Syndrome (CFS) using magnetic resonance imaging (MRI) and recent voxel-based morphometry (VBM) methods.

Methods:
Forty-two patients with CFS and thirty healthy volunteers were scanned on a 3-Tesla MRI scanner. Anatomical MRI scans were segmented, normalized and submitted to a VBM analysis using randomisation methods. Group differences were identified in overall segment volumes and voxel-wise in spatially normalized grey matter (GM) and white matter (WM) segments.

Results:
Accounting for total intracranial volume, patients had larger GM volume and lower WM volume. The voxel-wise analysis showed increased GM volume in several structures including the amygdala and insula in the patient group. Reductions in WM volume in the patient group were seen primarily in the midbrain, pons and right temporal lobe.

Conclusion:
Elevated GM volume in CFS is seen in areas related to processing of interoceptive signals and stress. Reduced WM volume in the patient group partially supports earlier findings of WM abnormalities in regions of the midbrain and brainstem.

ME Association comment: MEA Review: Grey and white matter differences in chronic fatigue syndrome

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Sleep quality in adolescents with CFS/ME

Research abstract:

Sleep quality in adolescents with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), by EK Josev, ML Jackson, B Bei, J Trinder, A Harvey, C Clarke, K Snodgrass, A Scheinberg, SJ Knight in J Clin Sleep Med. 2017 Sep 15; 13(9):1057-1066

 

Study objectives:

Little is known about the type and severity of sleep disturbances in the pediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) population, compared with healthy adolescents. Using a range of objective and subjective measures, the aim of this study was to investigate sleep quality, the relationship between objective and subjective measures of sleep quality, and their associations with anxiety in adolescents with CFS/ME compared with healthy controls.

Methods:

Twenty-one adolescents with CFS/ME aged 13 to 18 years (mean age 15.57 ± 1.40), and 145 healthy adolescents aged 13 to 18 years (mean age 16.2 ± 1.00) wore actigraphy watches continuously for 2 weeks to collect a number of objective sleep variables. The Pittsburgh Sleep Quality Index was used to obtain a subjective measure of sleep quality. Anxiety was measured by the Spence Children’s Anxiety scale.

Results:

On average over the 2-week period, adolescents with CFS/ME were found to have (1) significantly longer objective sleep onset latency, time in bed, total sleep time, and a later rise time (all P < .005), and (2) significantly poorer subjective sleep quality (P < .001), compared with healthy adolescents. The CFS/ME patient group displayed higher levels of anxiety (P < .05), and in both groups, higher levels of anxiety were significantly related to poorer subjective sleep quality (P < .001).

Conclusions:

This study provides objective and subjective evidence of sleep disturbance in adolescents with CFS/ME compared with healthy adolescent controls.

 

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Can physical assessment techniques aid diagnosis in people with CFS/ME?

Research abstract:

Can physical assessment techniques aid diagnosis in people with chronic fatigue syndrome/myalgic encephalomyelitis?  A diagnostic accuracy study, by Lucy Hives, Alice Bradley, James Richards, Chris J Sutton, James Selfe, Bashkar Basu, Kerry Maguire, Gail Sumner, Tarek Gaber, Annice Mukherjee, and Raymond Perrin, Raymond in BMJ Open, October 2017 [Preprint].

Objective:
To assess 5 physical signs to see whether they can assist in the screening of patients with CFS/ME, and potentially lead to quicker treatment.

Methods:
This was a diagnostic accuracy study with inter-rater agreement assessment. Participants recruited from 2 NHS hospitals, local CFS/ME support groups and the community were examined by three practitioners on the same day in a randomized order. Two Allied Health Professionals (AHPs) performed independent examinations of physical signs including;
postural/mechanical disturbances of the thoracic spine, breast varicosities, tender Perrin’s point, tender coeliac plexus and dampened cranial flow. A physician conducted a standard clinical neurological and rheumatological assessment, whilst looking for patterns of illness
behaviour. Each examination lasted approximately 20 minutes.

Results:
Ninety-four participants were assessed, 52 CFS/ME patients and 42 non-CFS/ME controls, aged 18-60. Cohen’s kappa revealed agreement between the AHPs was substantial for presence of the tender coeliac plexus (kappa=0.65, p<0.001) and moderate for postural/mechanical disturbance of the thoracic spine (kappa=0.57, p<0.001) and Perrin’s point (kappa=0.56, p<0.001).

A McNemar’s test found no statistically significant bias in the diagnosis by the experienced AHP relative to actual diagnosis, (p=1.0) and a marginally non-significant bias by the newly trained AHP, p=0.052. There was however, a significant bias in the diagnosis made by the physician relative to actual diagnosis, (p<0.001), indicating poor diagnostic utility of the clinical neurological and rheumatological assessment.

Conclusions:
Using the physical signs appears to improve the accuracy of identifying people with CFS/ME and shows agreement with current diagnostic techniques, however the present study concludes that only 2 of these may be needed. Examining for physical signs is both quick and simple for the AHP and may be used as an efficient screening tool for CFS/ME. This is a small single centre study and therefore further validation in other centres and larger populations is needed.

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North Wales Draft Plan for health & social care services – do you agree?

Draft North Wales Local Area Plan

Following the publication of the regional population needs assessment on 1st April 2017, it is a requirement to publish a (North Wales) Local Area Plan by 1 April 2018.

The first draft of the regional plan is now out for consultation here

The plan explains how authorities will work together across North Wales to deliver health and social care services.

There are some gaps in the plan where more information is needed about what is happening at the moment and suggestions for what needs to happen.

Your help is invited –  Please could you complete the online survey or send any additional information to sarah.bartlett@denbighshire.gov.uk by 31 October 2017.

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Are current CFS criteria diagnosing different disease phenotypes?

Research abstract:

Are current chronic fatigue syndrome criteria diagnosing different disease phenotypes? by Laura Maclachlan, Stuart Watson, Peter Gallagher, Andreas Finkelmeyer, Leonard A. Jason, Madison Sunnquist, Julia L. Newton, in PLoS ONE 12(10) [Published: October 20, 2017]

Importance:

Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms diagnosed with a number of different polythetic criteria. Heterogeneity across these diagnostic criteria is likely to be confounding research into the as-yet-unknown pathophysiology underlying this stigmatised and debilitating condition and may diagnose a disease spectrum with significant implications for clinical management. No studies to date have objectively investigated this possibility using a validated measure of CFS symptoms–the DePaul Symptom Questionnaire (DSQ).

Objective:

To examine whether current CFS diagnostic criteria are identifying different disease phenotypes using the DSQ.

Design:

Case control study.

Setting:

Clinical Research Facility of the Royal Victoria Infirmary, Newcastle upon Tyne, UK.

Participants:

49 CFS subjects and ten matched, sedentary community controls, excluded for co-morbid depression.

Main outcomes and measures:

Self-reported autonomic and cognitive features were assessed with the Composite Autonomic Symptom Score (COMPASS) and Cognitive Failures Questionnaire (COGFAIL) respectively.

Objective autonomic cardiovascular parameters were examined using the Task Force® Monitor and a battery of neuropsychological tests administered for objective cognitive assessment.

Results:

Self-reported autonomic and cognitive symptoms were significantly greater in CFS subjects compared to controls. There were no statistically significant differences in objective autonomic measures between CFS and controls. There were clinically significant differences between DSQ subgroups on objective autonomic testing.

Visuospatial memory, verbal memory and psychomotor speed were significantly different between DSQ subgroups.

Conclusions and relevance:

The finding of no significant differences in objective autonomic testing between CFS and control subjects may reflect the inclusion of sedentary controls or exclusion for co-morbid depression. Consistent exclusion criteria would enable better delineation of these two conditions and their presenting symptoms.

Findings across CFS subgroups suggest subjects have a different disease burden on subjective and objective measures of function, autonomic parameters and cognitive impairment when categorised using the DSQ. Different CFS criteria may at best be diagnosing a spectrum of disease severities and at worst different CFS phenotypes or even different diseases. This complicates research and disease management and may contribute to the significant stigma associated with the condition.

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Jennifer Brea speaks about her film Unrest in UK media

Jennifer Brea and her film Unrest

Film director Jennifer Brea is visiting the UK to support the screening of her film Unrest in Parliament in London on 25 October 2017.

BBC Radio Bristol Interview with Dr Phil Hammond  26 October 2017.  Starts at 2 hrs 21 [Available until 18 Nov 2017

BBC World Service programme Outlook, 26 Oct 2017, features the background story of Jennifer Brea. Starts at 26 mins

thebmjopionion, 4 October 2017: Julian Sheather: Unrest

Unrest is heroic filmmaking. It takes a mysterious, stigmatized and invisible disorder and brings the condition and its sufferers into clear light. It is a tribute to the filmmaker and her extraordinary husband. And also a reminder, if we need it, that the world of human suffering has not been mapped in its entirety by medicine.

The Telegraph, 24 October 2017: Could this documentary change the way we perceive chronic fatigue syndrome?

Express, 23 October 2017: THIS mysterious condition affects millions more than MS – but you probably don’t know it

ME Association review of Unrest in Parliament: “I cannot recall a parliamentary meeting where we have had so much genuine interest in ME/CFS” 26 October 2017

ITV news interview with Jennifer Brea and Omar Wasow, 18 October 2017

Times, 17 October 2017:  Our lives were frozen by chronic fatigue syndrome

As Jennifer Brea’s chronic illness worsened and she spent more and more time confined to bed, she became increasingly active in her dreams. “Every night I’d have these incredibly kinetic dreams. I was flying or running up mountains. I’d wake up in the morning and realise that I was still in the same bedroom, and many mornings felt really disappointed that I was still alive.”

Guardian, 19 October 2017: Unrest review – powerful documentary about chronic fatigue syndrome

Jennifer Brea uses her own experience and others to build up a multifaceted portrait of the condition and the toll it takes

Cosmopolitan, 18 Oct 2017: What it’s like to live with an incurable illness no-one believes is real

Jennifer Brea was 28 when ME began to suck the life out of her. She was eventually left bed-bound, but doctors insisted tests showed there was nothing biologically wrong.

theupcoming.co.uk, 20 October 2017: “Picking up the camera was really an act of survival”: An interview with Unrest filmmaker Jennifer Brea 

Ahead of the UK release of Jennifer Brea’s widely acclaimed documentary Unrest, which details her experiences coping with chronic fatigue syndrome, we caught up with the filmmaker to discuss finding meaning in a meaningless experience, and how she finally found her voice again through the “magic” of film.

Join WAMES in bringing Jennifer’s film and campaign to Wales: read about #TimeForUnrestWales campaign

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NHS retrospective healthcare funding claims – register your intent to claim

NHS Retrospective Healthcare Funding Claims

People who believe their care should have been funded by the NHS are being encouraged by the Welsh Government to register their intent to make a claim.

 

People who think they, or someone they care for, may have been eligible for Continuing NHS Healthcare but paid for all, or part, of their care can submit a claim.

 

Potential claimants have until October 31st 2017 to register their intent to make a claim for continuing healthcare costs which were incurred between 1 October 2015 and 31 October 2016.

The NHS will provide advice to claimants and will complete all of the work required to review their case free of charge. This is not a legal process and there is no requirement for people to appoint a solicitor. However, if a solicitor is used, these costs cannot be reimbursed. All claims will be reviewed within six months of the NHS having all the information that it needs. Information on how to submit a claim can be found here

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Show others what living with ME is like through the WAMES’ photo project

ME and my world – a WAMES photo project

ME is a complex and often misunderstood illness.

Throughout 2018 WAMES will be exploring a number of ways to raise awareness of our condition.

To begin with, through a series of portraits and snapshots, the ‘ME and my world’ project aims to show others just what living with the illness is like.

We want to show what your ME world is, what happens when things are really bad, the small things you do to keep yourself going and the interests you have that helped get you through. We want to show the way ME affects people’s lives and how it affects their world and those around them.

Show others what your ME world is like

Take part by observing and recording your life over the next few months.  If you would be willing to be photographed or just want to know more, then please email us at WAMES admin@wames.org.uk

Alternatively aim to send in your own photos that you feel illustrate your struggle with ME.

Tom Martin, photographer (and person with ME) will be overseeing this project.

 

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Rethinking childhood adversity in CFS

Research abstract:

Rethinking childhood adversity in chronic fatigue syndrome, by James E Clark, Sean L Davidson, Laura Maclachlan, Julia L Newton, Stuart Watson in Fatigue: Biomedicine, Health & Behavior [Published online: 10 Oct 2017]

Background:
Previous studies have consistently shown increased rates of childhood
adversity in chronic fatigue syndrome (CFS). However, such
aetiopathogenic studies of CFS are potentially confounded by
co-morbidity and misdiagnosis particularly with depression.

Purpose:
We examined the relationship between rates of childhood adversity using
two complimentary approaches (1) a sample of CFS patients who had no
lifetime history of depression and (2) a modelling approach.

Methods:
Childhood trauma questionnaire (CTQ) administered to a sample of 52
participants with chronic fatigue syndrome and 19 controls who did not
meet criteria for a psychiatric disorder (confirmed using the Structured
Clinical Interview for DSM-IV). Subsequently, Mediation Analysis (Baye’s
Rules) was used to establish the risk childhood adversity poses for CFS
with and without depression.

Results:
In a cohort of CFS patients with depression comprehensively excluded,
CTQ scores were markedly lower than in all previous studies and, in
contrast to these previous studies, not increased compared with healthy
controls. Post-hoc analysis showed that CTQ scores correlated with the
number of depressive symptoms during the lifetime worst period of low
mood. The probability of developing CFS given a history of childhood
trauma is 4%, a two-fold increased risk compared to the general
population. However, much of this risk is mediated by the concomitant
development of major depression.

Conclusions
The data suggests that previous studies showing a relationship between
childhood adversity and CFS may be attributable to the confounding
effects of co-morbid or misdiagnosed depressive disorder.

Keywords: Childhood adversity, chronic fatigue syndrome, modelling,
childhood trauma, depression

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