Cwsg anhwylderau yn CFS

Research Abstract

Objectives:  Despite sleep disturbances being a central complaint in patients with chronic fatigue syndrome (CFS), evidence of objective sleep abnormalities from over 30 studies is inconsistent. The present study aimed to identify whether sleep-specific phenotypes exist in CFS and explore objective characteristics that could differentiate phenotypes, while also being relevant to routine clinical practice.

Design: A cross-sectional, single-site study.

Setting:  A fatigue clinic in the Netherlands.

Participants:  A consecutive series of 343 patients meeting the criteria for CFS, according to the Fukuda definition.

Measures:  Patients underwent a single night of polysomnography (all-night recording of EEG, electromyography, electrooculography, ECG and respiration) that was hand-scored by a researcher blind to diagnosis and patient history.

Results:  Of the 343 patients, 104 (30.3%) were identified with a Primary Sleep Disorder explaining their diagnosis. A hierarchical cluster analysis on the remaining 239 patients resulted in four sleep phenotypes being identified at saturation. Of the 239 patients, 89.1% met quantitative criteria for at least one objective sleep problem. A one-way analysis of variance confirmed distinct sleep profiles for each sleep phenotype.

Relatively longer sleep onset latencies, longer Rapid Eye Movement (REM) latencies and smaller percentages of both stage 2 and REM characterised the first phenotype. The second phenotype was characterised by more frequent arousals per hour. The third phenotype was characterised by a longer Total Sleep Time, shorter REM Latencies, and a higher percentage of REM and lower percentage of wake time. The final phenotype had the shortest Total Sleep Time and the highest percentage of wake time and wake after sleep onset.

Conclusions: The results highlight the need to routinely screen for Primary Sleep Disorders in clinical practice and tailor sleep interventions, based on phenotype, to patients presenting with CFS. The results are discussed in terms of matching patients’ self-reported sleep to these phenotypes in clinical practice.

Are there sleep-specific phenotypes in patients with chronic fatigue syndrome? A cross-sectional polysomnography analysis   Zoe M Gotts, Vincent Deary, Julia Newton, Donna Van der Dussen, Pierre De Roy, Jason G Ellis   BMJ Open 2013;3

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Ymgynghoriad ad-drefnu ysbytai De Cymru

Mae Rhaglen De Cymru, yw enw’r cynllun i newid y ffordd y pedwar ysbyty yn cynnig gwasanaethau i bobl sy’n byw yn ne Cymru a de Powys.

Cael gwybod am ddyddiadau cyfarfodydd (yn dechrau 3 Mehefin) a dogfennau ymgynghori ar wefan y rhaglen De Cymru

Rhwng nawr ac 19 Gorffennaf 2013 rydym am glywed gan gynifer o bobl â phosib am y newidiadau a gynigir ar gyfer dyfodol y gwasanaethau hyn

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Anawsterau Diagnosis ar gyfer pobl dduon a lleiafrifoedd ethnig yn y DU

Research Abstract

Aim   This study aims to explore the possible reasons for the lower levels of diagnosis of chronic fatigue syndrome/myalgic encephalitis (CFS/ME) in the black and minority ethnic (BME) population, and the implications for management.

BACKGROUND:    Population studies suggest CFS/ME is more common in people from BME communities compared with the White British population. However, the diagnosis is made less frequently in BME groups.

METHODS:   Semi-structured qualitative interviews were conducted with 35 key stakeholders in NW England. Interviews were analysed using open explorative thematic coding.

FINDINGS:  There are barriers at every stage to the diagnosis and management of CFS/ME in people from BME groups. This begins with a lack of awareness of CFS/ME among BME respondents. Religious beliefs and the expectation of roles in the family and community mean that some people in BME groups may choose to manage their symptoms outside primary care using alternative therapies, prayer or spiritual healing.

When accessing primary care, all participants recognised the possible influence of language barriers in reducing the likelihood of a diagnosis of CFS/ME. Stereotypical beliefs, including labels such as ‘lazy’ or ‘work shy’ were also believed to act as a barrier to diagnosis. Patients highlighted the importance of an on-going relationship with the general practitioner (GP), but perceived a high turnover of GPs in inner city practices, which undermined the holistic approach necessary to achieve a diagnosis.

CONCLUSION:  Training is required for health professionals to challenge inaccurate assumptions about CFS/ME in BME groups. The focus on the individual in UK primary care may not be appropriate for this group due to the role played by the family and community in how symptoms can be presented and managed. Culturally sensitive, educational resources for patients are also needed to explain symptoms and legitimise consultation.

Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study.   Bayliss K, Riste L, Fisher L, Wearden A, Peters S, Lovell K, Chew-Graham C.  Prim Health Care Res Dev. 2013 May 23:1-13. [Epub ahead of print]

 

 

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Tystiolaeth o ymchwil i blentyndod CFS / ME yn brin

Review Abstract

Purpose  A range of interventions have been used for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in children and adolescents. Currently, debate exists as to the effectiveness of these different management strategies. The objective of this review was to synthesize and critically appraise the literature on interventions for pediatric CFS/ME.

Method   CINAHL, PsycINFO and Medline databases were searched to retrieve relevant studies of intervention outcomes in children and/or adolescents diagnosed with CFS/ME. Two reviewers independently selected articles and appraised the quality on the basis of predefined criteria.

Results A total of 24 articles based on 21 studies met the inclusion criteria. Methodological design and quality were variable. The majority assessed behavioral interventions (10 multidisciplinary rehabilitation; 9 psychological interventions; 1 exercise intervention; 1 immunological intervention). There was marked heterogeneity in participant and intervention characteristics, and outcome measures used across studies. The strongest evidence was for Cognitive Behavioral Therapy (CBT)-based interventions, with weaker evidence for multidisciplinary rehabilitation. Limited information exists on the maintenance of intervention effects.

Conclusions  Evidence for the effectiveness of interventions for children and adolescents with CFS/ME is still emerging. Methodological inadequacies and inconsistent approaches limit interpretation of findings. There is some evidence that children and adolescents with CFS/ME benefit from particular interventions; however, there remain gaps in the current evidence base.

Interventions in Pediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Systematic Review.  Sarah J. Knight, Ph.D., Adam Scheinberg, M.

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Strategaeth ar gyfer diffinio a gwahaniaethu ME a CFS

 Abstract

The symptom spectrum of Myalgic Encephalomyelitis (ME) was first detailed in 1959 and later operationalised into a diagnostic protocol (Melvin Ramsey). In 1988 the Holmes case definition coined the term chronic fatigue syndrome (CFS). Fukuda’s Centers for Disease Control and Prevention criteria are very heterogeneous and comprise patients with milder symptoms than the Holmes case definition. The CDC Empirical Criteria for CFS lack sensitivity and/or specificity.

Other CFS definitions, e.g. the Oxford criteria, delineate people with idiopathic fatigue. Some authors make the clinical CFS diagnosis when slightly increased self-rated fatigue scores are present.

In 2011, Carruthers’ International Consensus Criteria attempted to restore the focus on selecting people who suffer from ME. Cognitive bias in criteria construction, patient selection, data collection and interpretation has led to the current state of epistemological chaos with ME, CFS, CFS/ME and ME/CFS, and CF being used interchangeably.

Moreover, none of the above mentioned classifications meet statistically based criteria for validation. Diagnostic criteria should be based on statistical methods rather than consensus declarations. Ongoing discussions about which case definition to employ miss the point that the criteria did not pass appropriate external validation.

In 2012, Maes et al. performed pattern recognition methods and concluded that CFS patients (according to Fukuda’s criteria) should be divided into those with CFS or ME, on the basis that people with ME display a worsening of their illness following increases in physical or cognitive activity. Both ME and CFS are complex disorders that share neuro-immune disturbances, which are more severe in ME than in CFS. This paper expands on that strategy and details a range of objective tests, which confirm that a person with ME or CFS has a neuro-immune disease.

By means of pattern recognition methods future research should refine the Maes’ case definitions for ME and CFS by including well-scaled symptoms, staging characteristics and neuro-immune biomarkers, including immune-inflammatory assays, bioenergetic markers and brain imaging.

Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions.  Morris G, Maes M. Neuro Endocrinol Lett. 2013 May 22;34(3):185-199.

 

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Increased 5-HT autoimmune activity in ME/CFS

Abstract

Background

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is accompanied by activation of immuno-inflammatory pathways, increased bacterial translocation and autoimmune responses to serotonin (5-HT). Inflammation is known to damage 5-HT neurons while bacterial translocation may drive autoimmune responses. This study has been carried out to examine the autoimmune responses to 5-HT in ME/CFS in relation to inflammation and bacterial translocation.

Methods

We examined 5-HT antibodies in 117 patients with ME/CFS (diagnosed according to the centers for disease control and prevention criteria, CDC) as compared with 43 patients suffering from chronic fatigue (CF) but not fulfilling the CDC criteria and 35 normal controls. Plasma interleukin-1 (IL-1), tumor necrosis factor (TNF)α, neopterin and the IgA responses to Gram-negative bacteria were measured. Severity of physio-somatic symptoms was measured using the fibromyalgia and chronic fatigue syndrome rating scale (FF scale).

Results

The incidence of positive autoimmune activity against 5-HT was significantly higher (p<0.001) in ME/CFS (61.5%) than in patients with CF (13.9%) and controls (5.7%). ME/CFS patients with 5-HT autoimmune activity displayed higher TNFα, IL-1 and neopterin and increased IgA responses against LPS of commensal bacteria than those without 5-HT autoimmune activity. Anti-5-HT antibody positivity was significantly associated with increased scores on hyperalgesia, fatigue, neurocognitive and autonomic symptoms, sadness and a flu-like malaise.

Discussion

The results show that, in ME/CFS, increased 5-HT autoimmune activity is associated with activation of immuno-inflammatory pathways and increased bacterial translocation, factors which are known to play a role in the onset of autoimmune reactions. 5-HT autoimmune activity could play a role in the pathophysiology of ME/CFS and the onset of physio-somatic symptoms

In myalgic encephalomyelitis/chronic fatigue syndrome, increased autoimmune activity against 5-HT is associated with immuno-inflammatory pathways and bacterial translocation  Michael Maes et al     Journal of Affective Disorder  May 10 2013

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Definitions of CFS/ME used in prevalence research

Abstract

Purpose

Prevalence estimates have been based on several case definitions of chronic fatigue syndrome (CFS). The purpose of this work is to provide a rigorous overview of their application in prevalence research.

Methods

A systematic review of primary studies reporting the prevalence of CFS since 1990 was conducted. Studies were summarized according to study design, prevalence estimates, and case definition used to ascertain cases.

Results

Thirty-one studies were retrieved, and eight different case definitions were found. Early estimates of CFS prevalence were based on the 1988 Centers for Disease Control and Prevention, Australian, and Oxford. The 1994 Centers for Disease Control and Prevention, however, has been adopted internationally, as a general standard. Only one study has reported prevalence according to the more recent, Canadian Consensus Criteria. Additional estimates were also found according to definitions by Ho-Yen, the 2005 Centers for Disease Control and Prevention empirical definition, and an epidemiological case definition.

Conclusions

Advances in clinical case definitions during the past 10 years such as the Canadian Consensus Criteria have received little attention in prevalence research. Future assessments of prevalence should consider adopting more recent developments, such as the newly available International Consensus Criteria. This move could improve the surveillance of more specific cases found within CFS.

The adoption of chronic fatigue syndrome/myalgic encephalomyelitis case definitions to assess prevalence: a systematic review. Samantha Johnston et al  Annals of Epidemiology Vol 23, Issue 6 , Pages 371-376, June 2013

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Cyfweliad gan Caru James am ME ar S4C

Caru James talks in Welsh on S4C’s Prynhawn Da about her experience of ME and employment with ME.

Prynhawn Da episode 53 (available until 20 June) Caru’s interview begins at 27 minutes for 5 minutes.

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“Bedroom tax” hearing

The High Court this week is considering 10 claims being brought against the Government’s ‘Bedroom Tax’ that came into force on 1 April this year.

The claims, made by a range of people affected by the Bedroom Tax, are being heard together over three days starting on Wednesday 15 May. Most of the claimants are disabled, or share their home with a disabled person. The changes to the regulations mean they are defined as under-occupying their properties and liable to benefit reductions of between 14 to 25 per cent.

The Equality and Human Rights Commission is also intervening as an independent third party expert to assist the court on discrimination law and human rights. It will submit that the new regulations potentially breach the right of people not to be discriminated against in the enjoyment of their rights (A.14) and their right to a family life (A.8).

It will also advise the court on the UK’s duty to provide reasonable accommodation for people with a disability under international law, particularly the obligations under the United Nations Convention on the Rights of People with Disabilities (UNCRPD). This requires the government to take steps to abolish or modify laws that discriminate against disabled people.

The Commission will also assist the court to determine whether the Department for Work and Pensions has met the Public Sector Equality Duty. An Equality Impact Assessment carried out by the Department found overall 420,000 disabled tenants were likely to be affected losing around £14 a week. However, the assessment did not calculate how many of those affected need a second bedroom due to their disability or a family member’s.

We are Spartacus report on bedroom tax hearing

Commission intervenes in judicial review of new housing benefit regulations

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Cydnabyddiaeth a gofal ME yw ‘diffyg’ yng Nghymru

An ITV news report on 13th May 2013 highlighted the problems faced by people with ME in finding health and social care in Wales:

People with the condition ME in Wales say they suffer from an absence of specialist care, and have found a lack of sympathy and knowledge in the NHS and social services.

Michelle Penny is 28 and from Dinas Powys in the Vale of Glamorgan. She describes how her “day-to-day life is really difficult”, and that she has been “pushed to the back and ignored”.

“We have a growing recognition and a growing investment in conditions such as Alzheimer’s, but conditions such as ME are not so readily recognised or invested in” says Ana Palazon, Chair of the Wales Neurological Alliance. “We want parity and equity of recognition and services for all conditions.”

The Welsh Government says “progress has not been universal across Wales” since it published a care strategy for the treatment of patients with ME in 2011.

The Welsh Government requires Health Boards to put in place measures to ensure prompt diagnosis and treatment for patients with ME. A care pathway was set out in 2011, with the involvement of the Chronic Fatigue Syndrome Task and Finish Group commissioned by the Minister for Health and Social Services in 2010.

Last year, the Welsh Government asked all Health Boards for updates on service developments since the publication of this guidance. The responses received show that there have been some improvements, but that progress has not been universal across Wales.

Therefore the Task and Finish Group will be reconvened this year to consider how services can be further developed to meet the needs of people with CFS and ME in Wales.

Watch the broadcast

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