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"Myalgic Encephalomyelitis"

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https://www.readbyqxmd.com/read/28810428/how-have-selection-bias-and-disease-misclassification-undermined-the-validity-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-studies
#1
Luis Nacul, Eliana M Lacerda, Caroline C Kingdon, Hayley Curran, Erinna W Bowman
Myalgic encephalomyelitis/chronic fatigue syndrome has been a controversial diagnosis, resulting in tensions between patients and professionals providing them with care. A major constraint limiting progress has been the lack of a 'gold standard' for diagnosis; with a number of imperfect clinical and research criteria used, each defining different, though overlapping, groups of people with myalgic encephalomyelitis or chronic fatigue syndrome. We review basic epidemiological concepts to illustrate how the use of more specific and restrictive case definitions could improve research validity and drive progress in the field by reducing selection bias caused by diagnostic misclassification...
March 1, 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28805529/cognitive-behaviour-therapy-and-objective-assessments-in-chronic-fatigue-syndrome
#2
Graham McPhee
Most evaluations of cognitive behavioural therapy to treat people with chronic fatigue syndrome/myalgic encephalomyelitis rely exclusively on subjective self-report outcomes to evaluate whether treatment is effective. Few studies have used measures appropriate to assessing whether cognitive behavioural therapy changes in more objective measures. A review of studies incorporating objective measures suggests that there is a lack of evidence that cognitive behavioural therapy produces any improvement in a patient's physical capabilities or other objective measures such as return to work...
August 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28805528/pace-investigators-response-is-misleading-regarding-patient-survey-results
#3
Karen D Kirke
The PACE investigators' citation of a patient survey might mislead readers into thinking that the experience of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) supports PACE findings. In fact, patient survey evidence directly contradicts the results of the PACE trial. A review of survey data published between 2001 and 2015 reveals that for most patients, graded exercise therapy leads to worsening of symptoms, cognitive behavioural therapy leads to no change in symptoms, and pacing leads to improvement...
August 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28805527/bias-misleading-information-and-lack-of-respect-for-alternative-views-have-distorted-perceptions-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-and-its-treatment
#4
Ellen Goudsmit, Sandra Howes
The PACE trial is one of the most recent studies evaluating cognitive behavioural therapy and graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome. These interventions are based on a model which assumes that symptoms are perpetuated by factors such as misguided beliefs and a lack of activity. Our analysis indicates that the researchers have shown significant bias in their accounts of the literature and may also have overstated the effectiveness of the above treatments. We submit that their approach to criticisms undermines the scientific process and is inconsistent with best practice...
August 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28805522/pace-trial-claims-for-recovery-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-true-or-false-it-s-time-for-an-independent-review-of-the-methodology-and-results
#5
Charles Bernard Shepherd
The PACE trial set out to discover whether cognitive behaviour therapy and graded exercise therapy are safe and effective forms of treatment for myalgic encephalomyelitis/chronic fatigue syndrome. It concluded that these interventions could even result in recovery. However, patient evidence has repeatedly found that cognitive behaviour therapy is ineffective and graded exercise therapy can make the condition worse. The PACE trial methodology has been heavily criticised by clinicians, academics and patients...
August 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28805520/pace-team-response-shows-a-disregard-for-the-principles-of-science
#6
Jonathan Edwards
The PACE trial of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome/myalgic encephalomyelitis has raised serious questions about research methodology. An editorial article by Geraghty gives a fair account of the problems involved, if anything understating the case. The response by White et al. fails to address the key design flaw, of an unblinded study with subjective outcome measures, apparently demonstrating a lack of understanding of basic trial design requirements. The failure of the academic community to recognise the weakness of trials of this type suggests that a major overhaul of quality control is needed...
August 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28805519/pace-trial-authors-continue-to-ignore-their-own-null-effect
#7
Mark Vink
Protocols and outcomes for the PACE trial were changed after the start of the trial. These changes made substantial differences, leading to exaggerated claims for the efficacy of cognitive behavior therapy and graded exercise therapy in myalgic encephalomyelitis/chronic fatigue syndrome. The small, self-reported improvements in subjective measures cannot be used to say the interventions are effective, particularly in light of the absence of objective improvement. Geraghty's criticism of the trial was reasonable and supported by the evidence...
August 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28805513/distress-signals-does-cognitive-behavioural-therapy-reduce-or-increase-distress-in-chronic-fatigue-syndrome-myalgic-encephalomyelitis
#8
Keith R Laws
Reducing the psychological distress associated with chronic fatigue syndrome/myalgic encephalomyelitis is seen as a key aim of cognitive behavioural therapy. Although cognitive behavioural therapy is promoted precisely in this manner by the National Institute of Clinical Excellence, the evidence base on distress reduction from randomised controlled trials is limited, equivocal and poor quality. Crucially, data derived from multiple patient surveys point to worsening and increase distress; however, despite being invited, such data have been dismissed as second class by National Institute of Clinical Excellence...
August 2017: Journal of Health Psychology
https://www.readbyqxmd.com/read/28800089/fitnet-s-internet-based-cognitive-behavioural-therapy-is-ineffective-and-may-impede-natural-recovery-in-adolescents-with-myalgic-encephalomyelitis-chronic-fatigue-syndrome-a-review
#9
REVIEW
Simin Ghatineh, Mark Vink
The Dutch Fatigue In Teenagers on the interNET (FITNET) study claimed that after 6 months, internet based cognitive behaviour therapy in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), led to a 63% recovery rate compared to 8% after usual care, and that this was maintained at long term follow up (LTFU). Our reanalysis shows that their post-hoc definition of recovery included the severely ill, the unblinded trial had no adequate control group and it used lax selection criteria as well as outcomes assessed via questionnaires rather than objective outcomes, further contributing to exaggerated recovery figures...
August 11, 2017: Behavioral Sciences
https://www.readbyqxmd.com/read/28765100/pacing-conventional-physical-activity-and-active-video-games-to-increase-physical-activity-for-adults-with-myalgic-encephalomyelitis-chronic-fatigue-syndrome-protocol-for-a-pilot-randomized-controlled-trial
#10
Katia Elizabeth Ferrar, Ashleigh E Smith, Kade Davison
BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious illness of biological origin characterized by profound physical and cognitive exhaustion and postexertion malaise. Pacing is a common strategy used to manage available energy and complete activities of daily living; yet little research has investigated this as a strategy to increase physical activity levels. Typically, people living with ME/CFS are faced by unique barriers to physical activity participation and are less physically active than healthy peers...
August 1, 2017: JMIR Research Protocols
https://www.readbyqxmd.com/read/28760971/cytokine-signature-associated-with-disease-severity-in-chronic-fatigue-syndrome-patients
#11
Jose G Montoya, Tyson H Holmes, Jill N Anderson, Holden T Maecker, Yael Rosenberg-Hasson, Ian J Valencia, Lily Chu, Jarred W Younger, Cristina M Tato, Mark M Davis
Although some signs of inflammation have been reported previously in patients with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), the data are limited and contradictory. High-throughput methods now allow us to interrogate the human immune system for multiple markers of inflammation at a scale that was not previously possible. To determine whether a signature of serum cytokines could be associated with ME/CFS and correlated with disease severity and fatigue duration, cytokines of 192 ME/CFS patients and 392 healthy controls were measured using a 51-multiplex array on a Luminex system...
July 31, 2017: Proceedings of the National Academy of Sciences of the United States of America
https://www.readbyqxmd.com/read/28760189/sleep-quality-in-adolescents-with-chronic-fatigue-syndrome-myalgic-encephalomyelitis-cfs-me
#12
Elisha K Josev, Melinda L Jackson, Bei Bei, John Trinder, Adrienne Harvey, Cathriona Clarke, Kelli Snodgrass, Adam Scheinberg, Sarah J Knight
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...
July 28, 2017: Journal of Clinical Sleep Medicine: JCSM: Official Publication of the American Academy of Sleep Medicine
https://www.readbyqxmd.com/read/28752613/sleep-patterns-among-patients-with-chronic-fatigue-a-polysomnography-based-study
#13
Evelina Pajediene, Indre Bileviciute-Ljungar, Danielle Friberg
OBJECTIVES: The purpose of this study was to detect treatable sleep disorders among patients complaining of chronic fatigue by using sleep questionnaires and polysomnography. METHODS: Patients were referred to hospital for investigations and rehabilitation because of a suspected diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The criteria for further referral to full-night polysomnography (PSG) were symptoms of excessive daytime sleepiness and/or tiredness in the questionnaires...
July 28, 2017: Clinical Respiratory Journal
https://www.readbyqxmd.com/read/28747192/the-european-me-cfs-biomarker-landscape-project-an-initiative-of-the-european-network-euromene
#14
REVIEW
Carmen Scheibenbogen, Helma Freitag, Julià Blanco, Enrica Capelli, Eliana Lacerda, Jerome Authier, Mira Meeus, Jesus Castro Marrero, Zaiga Nora-Krukle, Elisa Oltra, Elin Bolle Strand, Evelina Shikova, Slobodan Sekulic, Modra Murovska
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a common and severe disease with a considerable social and economic impact. So far, the etiology is not known, and neither a diagnostic marker nor licensed treatments are available yet. The EUROMENE network of European researchers and clinicians aims to promote cooperation and advance research on ME/CFS. To improve diagnosis and facilitate the analysis of clinical trials surrogate markers are urgently needed. As a first step for developing such biomarkers for clinical use a database of active biomarker research in Europe was established called the ME/CFS EUROMENE Biomarker Landscape project and the results are presented in this review...
July 26, 2017: Journal of Translational Medicine
https://www.readbyqxmd.com/read/28713878/access-to-medical-care-for-individuals-with-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-a-call-for-centers-of-excellence
#15
Madison Sunnquist, Laura Nicholson, Leonard A Jason, Kenneth J Friedman
The current study sought to better understand the experience of individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) in accessing care for their debilitating illness. Of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of participants were interested in specialist care. Participants cited geographic and financial barriers as most frequently precluding access to specialists. Furthermore, satisfaction with specialist care greatly exceeded satisfaction with non-specialist care...
April 2017: Mod Clin Med Res
https://www.readbyqxmd.com/read/28713856/differences-in-me-and-cfs-symptomology-in-patients-with-normal-and-abnormal-exercise-test-results
#16
Stephanie L McManimen, Leonard A Jason
Post-exertional malaise (PEM) is a cardinal symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), which often distinguishes patients with this illness from healthy controls or individuals with exclusionary illnesses such as depression. However, occurrence rates for PEM fluctuate from subject to how the symptom is operationalized. One commonly utilized method is exercise testing, maximal or submaximal. Many patients with ME and CFS experience PEM after participating in these tests, and often show abnormal results...
2017: International Journal of Neurology and Neurotherapy
https://www.readbyqxmd.com/read/28694809/unperturbed-cytotoxic-lymphocyte-phenotype-and-function-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-patients
#17
Jakob Theorell, Indre Bileviciute-Ljungar, Bianca Tesi, Heinrich Schlums, Mette Sophie Johnsgaard, Babak Asadi-Azarbaijani, Elin Bolle Strand, Yenan T Bryceson
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a debilitating disorder linked to diverse intracellular infections as well as physiological stress. Cytotoxic lymphocytes combat intracellular infections. Their function is attenuated by stress. Despite numerous studies, the role of cytotoxic lymphocytes in ME/CFS remains unclear. Prompted by advances in the understanding of defects in lymphocyte cytotoxicity, the discovery of adaptive natural killer (NK) cell subsets associated with certain viral infections, and compelling links between stress, adrenaline, and cytotoxic lymphocyte function, we reassessed the role of cytotoxic lymphocytes in ME/CFS...
2017: Frontiers in Immunology
https://www.readbyqxmd.com/read/28674681/myalgic-encephalomyelitis-chronic-fatigue-syndrome-diagnosis-and-management-in-young-people-a-primer
#18
REVIEW
Peter C Rowe, Rosemary A Underhill, Kenneth J Friedman, Alan Gurwitt, Marvin S Medow, Malcolm S Schwartz, Nigel Speight, Julian M Stewart, Rosamund Vallings, Katherine S Rowe
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents...
2017: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/28661067/medial-prefrontal-cortex-deficits-correlate-with-unrefreshing-sleep-in-patients-with-chronic-fatigue-syndrome
#19
Zack Y Shan, Richard Kwiatek, Richard Burnet, Peter Del Fante, Donald R Staines, Sonya M Marshall-Gradisnik, Leighton R Barnden
Unrefreshing sleep is a hallmark of chronic fatigue syndrome/myalgic encephalomyelitis (CFS). This study examined brain structure variations associated with sleep quality in patients with CFS. 38 patients with CFS (34.8 ± 10.1 years old) and 14 normal controls (NCs) (34.7 ± 8.4 years old) were recruited. All subjects completed the Hospital Anxiety and Depression Scale, Pittsburgh Sleep Quality Index (PSQI), and Chalder Fatigue Scale (CFQ) questionnaires. Brain MRI measures included global and regional grey and white matter volumes, magnetization transfer T1 weighted (MT-T1w) intensities, and T1 weighted (T1w) and T2 weighted spin echo signal intensities...
June 29, 2017: NMR in Biomedicine
https://www.readbyqxmd.com/read/28659269/practical-management-of-chronic-fatigue-syndrome-or-myalgic-encephalomyelitis-in-childhood
#20
REVIEW
Amberly Brigden, Maria Loades, Anna Abbott, Joanne Bond-Kendall, Esther Crawley
Paediatric chronic fatigue syndrome or myalgic encephalomyelitis affects at least 1% of secondary school children in the UK and is very disabling. Treatment is effective but few children get a diagnosis or access treatment. This paper summarises what we currently know about diagnosing and treating this important illness in childhood.
June 28, 2017: Archives of Disease in Childhood
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