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                            1
                            2023Institute for Quality and Efficiency in Healthcare (IQWiG)
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                            Current scientific knowledge on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) 1 Translation of the research question, discussion and conclusion of the final report N21-01 Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) – Aktueller Kenntnisstand (Version 1.0; Status: 17 April 2023 [German original], 26 May 2023 [English translation]). Please note: This document is provided as a service by IQWiG to English-language readers. However, solely the German original text is absolutely authoritative and legally binding. Myalgic encephalomyelitis / Chronic fatigue syndrome (ME/CFS) Current state of knowledge1 EXTRACT IQWiG Reports – Commission No. N21-01 Extract of final report N21-01 Version 1.0 ME/CFS – Current state of knowledge 17 April 2023 Institute for Quality
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                            2024NIHR HTA programme
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                            Comparison of cognitive behaviour therapy versus activity management, both delivered remotely, to treat paediatric chronic fatigue syndrome/myalgic encephalomyelitis: the UK FITNET-NHS RCT Comparison of cognitive behaviour therapy versus activity management, both delivered remotely, to treat paediatric chronic fatigue syndrome/myalgic encephalomyelitis: the UK FITNET-NHS RCT * Text only * * Home
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                            3
                            2024BMJ Best Practice
                            Myalgic encephalomyelitis (Chronic fatigue syndrome) Skip to main contentSkip to searchLog inEnglish#{autosuggest.search}#{autosuggest.search}Myalgic encephalomyelitis (Chronic fatigue syndrome) MENULog in or subscribe to access all of BMJ Best PracticeLast reviewed:10 Dec 2023Last updated:09 Jan 2024SummaryMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe, multisystemic on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): expert consensus on the diagnosis, service provision, and care of people with ME/CFS in EuropeMore GuidelinesPatient leafletsDepression in adults: what is it?Depression in adults: what treatments work?More Patient leafletsLog in or subscribe to access all of BMJ Best PracticeUse of this content is subject to our disclaimerLog in or subscribe
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                            2021National Institute for Health and Care Excellence - Clinical Guidelines
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                            ...........................................................................................................................59 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management(NG206)© NICE 2022. All rights reserved. Subject to Notice of rights (https://www.nice.org.uk/terms-and-conditions#notice-of-rights).Page 3 of87Suspecting ME/CFS -of-rights).Page 4 of87Overview Overview This guideline covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning
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                            2024PLoS ONE
                            Phase-dependent trends in the prevalence of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) related to long COVID: A criteria-based retrospective study in Japan. The characteristics of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) related to COVID-19 have remained uncertain. To elucidate the clinical trend of ME/CFS induced by long COVID, we examined data for patients who visited our outpatient clinic established in a university hospital during the period from Feb 2021 to July 2023. Long COVID patients were classified into two groups, an ME/CFS group and a non-ME/CFS group, based on three diagnostic criteria. The prevalence of ME/CFS in the long COVID patients was 8.4% (62 of 739 cases; female: 51.6%) and factors related to ME/CFS were severe illness, smoking
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                            Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence. Recent studies provide strong evidence for a key role of skeletal muscle pathophysiology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In a 2021 review article on the pathophysiology of ME/CFS, we postulated that hypoperfusion and ischemia can result in excessive sodium and calcium overload in skeletal muscles of ME/CFS patients to cause mitochondrial damage. Since then, experimental evidence has been provided that supports this concept. We collect, summarize and discuss the current state of knowledge for the key role of skeletal muscle pathophysiology. We try to explain which risk factors and mechanisms
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                            2023INESSS (Quebec)
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                            The management of myalgic encephalomyelitis / chronic fatigue syndrome The management of myalgic encephalomyelitis / chronic fatigue syndrome English summary Une production de l’Institut national d’excellence en santé et en services sociaux (INESSS) APRIL 2023 1 SUMMARY The management of myalgic encephalomyelitis / chronic fatigue syndrome Introduction Myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) is a chronic disease involving various multisystem clinical manifestations. The diagnostic process is complicated by the existence of different diagnostic criteria and the lack of confirmatory testing. In addition, management is an issue as some clinical manifestations are unfamiliar to primary care clinicians and others require adaptation of standard
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                            2024BMC Neurology
                            Chronic Overlapping Pain Conditions in people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a sample from the Multi-site Clinical Assessment of ME/CFS (MCAM) study. Chronic overlapping pain conditions (COPCs), pain-related conditions that frequently occur together, may occur in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and could impact illness severity. This study aimed to identify comorbid COPCs in patients with ME/CFS and evaluate their impact on illness severity. We used data from 923 participants in the Multi-Site Clinical Assessment of ME/CFS study, conducted in seven U.S. specialty clinics between 2012 and 2020, who completed the baseline assessment (595 ME/CFS and 328 healthy controls (HC)). COPCs included chronic low back pain (cLBP
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                            'The world was going through what we go through everyday': The experiences of women with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) living with their partners during the COVID-19 lockdown in the United Kingdom. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue (JAMA: The Journal of the American Medical Association, 313, 2015, 1101). The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the United Kingdom. The study adopted a qualitative design comprising semi-structured interviews with participants. Interviews were analysed using thematic analysis (TA). Participants were women with ME/CFS (n = 21) recruited
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                            Evaluation of a Webinar to Increase Health Professionals' Knowledge about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe chronic illness and patients with ME/CFS are often medically underserved in Germany and other countries. One contributing factor is health professionals' lack of knowledge about epidemiology , diagnostic criteria, and treatment of ME/CFS. Opportunities are scarce for health professionals to receive continuing medical education on ME/CFS. The current research addressed this need for further education and investigated the gain of knowledge from a webinar for German-speaking health professionals. In two studies (total sample: = 378), participants in the intervention condition completed a knowledge
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                            2023American Journal of Medicine
                            People With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Exhibit Similarly Impaired Vascular Function. This study aimed to compare flow-mediated dilation values between individuals with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and healthy age-matched controls to assess the potential implications for clinical management and long-term health outcomes. A case-case-control approach was employed, and flow-mediated dilation measurements were obtained from 51 participants (17 Long COVID patients, 17 ME/CFS patients, and 17 healthy age-matched controls). Flow-mediated dilation values were analysed using one-way ANOVA for between-group comparisons. Results revealed significantly impaired endothelial function in both Long COVID and ME/CFS
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                            2022BMC Public Health
                            Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Australian primary care patients: only part of the story? ME/CFS is a disorder characterized by recurrent fatigue and intolerance to exertion which manifests as profound post-exertional malaise. Prevalence studies internationally have reported highly variable results due to the 20 + diagnostic criteria. For Australia , the prevalence of ME/CFS based on current case definitions is unknown. To report prevalence of ME/CFS in patients aged ≥ 13 years attending Australian primary care settings for years 2015-2019, and provide context for patterns of primary care attendance by people living with ME/CFS. Conducted in partnership with the Patient Advisory Group, this study adopted a mixed methods approach. De-identified primary care
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                            2024JAMA
                            NIH Study Provides Long-Awaited Insight Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This Medical News article discusses a new US National Institutes of Health study of patients with the chronic—and chronically misunderstood—disease.
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                            2024PLoS ONE
                            Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be triggered by infectious agents including severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). However, the impact of the coronavirus disease 2019 (COVID-19) pandemic on ME/CFS prevalence is not well characterized. In this population-based cross-sectional study, we enrolled a stratified random sample of 9,825 adult participants in the Kaiser Permanente Northern California (KPNC) integrated health system from July to October 2022 to assess overall ME/CFS-like illness prevalence and the proportion that were identified following COVID-19 illness. We used medical record and survey data to estimate
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                            2024PLoS ONE
                            Six-year follow-up of participants in two clinical trials of rituximab or cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. In this six-year follow-up study, we used patient-reported outcome measures (PROMs) to compare values at baseline, at 18 months, and at six-year follow up from the CycloME and the RituxME trials. Based on the hypothesis that ME/CFS in a subgroup in a subgroup may modulate the disease course in a beneficial way. However, cyclophosphamide carries toxicity concerns and should not be used for ME/CFS patients outside clinical trials. Rather, these data should encourage efforts to better understand the disease mechanisms and to search for targeted and less toxic immune modulatory treatment for this patient group.
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                            2025BMC Infectious Diseases
                            and myalgic encephalomyelitis - chronic fatigue syndrome (ME/CFS). GWAS analyses were performed using logistic regression in SUGEN, assuming an additive genetic model, and adjusting for age, sex, array, and the first 10 principal components calculated from whole genome genotyping to adjust for ancestry, and accounting for relatedness including all 1st degree relationships. The functional mapping A comparison of genome-wide association analyses of persistent symptoms after Lyme disease, fibromyalgia, and myalgic encephalomyelitis - chronic fatigue syndrome. Up to 20% of Lyme disease cases experience post-treatment Lyme disease syndrome (PTLDS). The biological basis for PTLDS is poorly understood and no evidence-based treatment has been identified. Genetic studies have the potential
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                            2025American Journal of Medicine
                            Managing Energy, and Shaping Care: Insights from Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Co-Production Workshops. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, debilitating condition characterised by severe fatigue that is not relieved by rest and is often exacerbated by physical or mental activity. A key challenge for individuals with ME/CFS is energy management and to date, the only recommended strategy is "activity pacing." This approach involves balancing activity and rest to avoid overexertion and minimise the risk of symptom exacerbation, commonly known as "post-exertional malaise"(PEM). A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked
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                            2023PLoS ONE
                            Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000-2.5 million individuals in the United States. Persons with ME/CFS have a substantial reduction in their ability to engage in pre-illness levels of activity. Multiple symptoms include profound fatigue, post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance, pain, and other symptoms persisting for more than 6 months. Diagnosis is challenging due to fluctuating and complex symptoms. ME/CFS Common Data Elements (CDEs) were identified in the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data
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                            2023PLoS ONE
                            Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: A mixed methods study. Encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID share some clinical and social characteristics. We predicted that this would lead to an increased interaction between pre-pandemic members of an ME/CFS online support community and a long COVID community. We performed a mixed-methods retrospective observational study of the Reddit activity of 7,544 users active on Reddit's long COVID forum. From among 1600 forums, pre-pandemic activity specifically on a ME/CFS forum is the top predictor of later participation on the long COVID forum versus an acute COVID support
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                            2021Medicina (Kaunas, Lithuania)
                            Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Patients: A Randomized Crossover Trial. Orthostatic intolerance (OI) is a clinical condition in which symptoms worsen upon assuming and maintaining upright posture and are ameliorated by recumbency. OI has a high prevalence in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Limited data are available to guide the treatment of OI in ME/CFS patients. We and others have previously described patient-reported subjective improvement in symptoms using compression stockings. We hypothesized that these subjective reports would be accompanied by objective hemodynamic improvements. We performed a randomized crossover trial