Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group

Mudie, Kathleen; Estévez‐López, Fernando; Sekulić, Slobodan; Ivanovs, Andrejs; Sepúlveda, Nuno; Zalewski, Paweł; Mengshoel, Anne Marit; Korwin, Jean-Dominique de; Capo, Natasa Hinic; Alegre, José; Castro-Marrero, Jesús; Murovska, Modra; Nacul, Luís; Lacerda, Eliana

doi:10.20944/preprints202009.0744.v1

Cited by 4 publications

(7 citation statements)

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“…The EUROMENE network activities were organised in Working Groups (WG), including the Clinical Group, tasked to explore existing methods used for the diagnosis of cases in Europe and to develop recommendations for the diagnosis and treatment of people with ME/CFS in the continent. The recommendations for standardising the diagnostic criteria for ME/CFS to be used by European researchers are covered in a related EUROMENE document [26], which will allow comparability and better estimates.…”

Section: Development Of Recommendationsmentioning

confidence: 99%

“…For full details, see Carruthers et al, 2003 [2]. The structure of the CCC definition in adults and some aspects of the CDC-1994 [26] criteria were used to create a paediatric cases definition of ME/CFS [5,30].…”

Section: Considerations On Me/cfs Diagnosis For Clinical Purposesmentioning

confidence: 99%

“…Core assessments shown in Box 8 include examples of tests that may be used routinely for that aim. When research studies are linked to clinical practice, these and other questionnaires and instruments may also be used [26]. Further laboratory tests and imaging studies may be needed to identify potential co-morbidities, and/or to exclude other diagnoses.…”

Section: Detailed Clinical Characterization Laboratory and Other Testsmentioning

confidence: 99%

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European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

et al. 2021

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Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)—COST action 15111—from 2016 to 2020. The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.

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Section: Development Of Recommendationsmentioning

confidence: 99%

Section: Considerations On Me/cfs Diagnosis For Clinical Purposesmentioning

confidence: 99%

Section: Detailed Clinical Characterization Laboratory and Other Testsmentioning

confidence: 99%

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European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

et al. 2021

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“…The collection of this evidence will allow for the understanding of the role of the nervous system. In this sense, the EUROMENE Group (The European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has made an effort for consensus [ 84 , 85 ].…”

Section: Dysautonomiamentioning

confidence: 99%

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neurological Entity?

et al. 2021

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disorder of unknown physiopathology with multisystemic repercussions, framed in ICD-11 under the heading of neurology (8E49). There is no specific test to support its clinical diagnosis. Our objective is to review the evidence in neuroimaging and dysautonomia evaluation in order to support the neurological involvement and to find biomarkers serving to identify and/or monitor the pathology. The symptoms typically appear acutely, although they can develop progressively over years; an essential trait for diagnosis is “central” fatigue together with physical and/or mental exhaustion after a small effort. Neuroimaging reveals various morphological, connectivity, metabolic, and functional alterations of low specificity, which can serve to complement the neurological study of the patient. The COMPASS-31 questionnaire is a useful tool to triage patients under suspect of dysautonomia, at which point they may be redirected for deeper evaluation. Recently, alterations in heart rate variability, the Valsalva maneuver, and the tilt table test, together with the presence of serum autoantibodies against adrenergic, cholinergic, and serotonin receptors were shown in a subgroup of patients. This approach provides a way to identify patient phenotypes. Broader studies are needed to establish the level of sensitivity and specificity necessary for their validation. Neuroimaging contributes scarcely to the diagnosis, and this depends on the identification of specific changes. On the other hand, dysautonomia studies, carried out in specialized units, are highly promising in order to support the diagnosis and to identify potential biomarkers. ME/CFS orients towards a functional pathology that mainly involves the autonomic nervous system, although not exclusively.

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“…For all participants, the Registry scores responses to the UK ME/CFS Biobank (UKMEB) Symptoms Assessment Questionnaire to determine fulfillment of distinct ME/CFS case criteria [37], including the CDC-1994 (Fukuda) criteria [38], the Canadian Consensus criteria [39], the International Consensus criteria [40], the Institute of Medicine criteria [41], and the Oxford criteria [42]. This is to align with what has been proposed for use in clinical practice and currently being used by ME/CFS researchers worldwide [43]. Questionnaire responses are fed to a digitized version of the algorithm licensed from the UKMEB to the Registry, which is coded into the online platform in a separate endpoint that securely runs the data for scoring.…”

Section: Symptom Assessment and Algorithm For Me/cfs Case Criteriamentioning

confidence: 99%

The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform

Ramiller¹,

Mudie²,

Seibert³

et al. 2022

JMIR Res Protoc

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Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, heterogeneous disease that affects millions and lacks both diagnostics and treatments. Big data, or the collection of vast quantities of data that can be mined for information, have transformed the understanding of many complex illnesses, such as cancer and multiple sclerosis, by dissecting heterogeneity, identifying subtypes, and enabling the development of personalized treatments. It is possible that big data can reveal the same for ME/CFS. Objective This study aims to describe the protocol for the You + ME Registry, present preliminary results related to participant enrollment and satisfaction, and discuss the limitations of the registry as well as next steps. Methods We developed and launched the You + ME Registry to collect longitudinal health data from people with ME/CFS, people with long COVID (LC), and control volunteers using rigorous protocols designed to harmonize with other groups collecting data from similar groups of people. Results As of September 30, 2021, the You + ME Registry had over 4200 geographically diverse participants (3033/4339, 69.9%, people with ME/CFS; 833/4339, 19.2%, post–COVID-19 people; and 473/4339, 10.9%, control volunteers), with an average of 72 new people registered every week. It has qualified as “great” using a net promotor score, indicating registrants are likely to recommend the registry to a friend. Analyses of collected data are currently underway, and preliminary findings are expected in the near future. Conclusions The You + ME Registry is an invaluable resource because it integrates with a symptom-tracking app, as well as a biorepository, to provide a robust and rich data set that is available to qualified researchers. Accordingly, it facilitates collaboration that may ultimately uncover causes and help accelerate the development of therapies. Trial Registration ClinicalTrials.gov NCT04806620; https://clinicaltrials.gov/ct2/show/NCT04806620 International Registered Report Identifier (IRRID) DERR1-10.2196/36798

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Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group

Cited by 4 publications

References 72 publications

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neurological Entity?

The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform

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