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Article

Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)

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School of Business & Economics, National University of Ireland Galway, University Road, H91 TK33 Galway, Ireland
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Society and Health, Buckinghamshire New University, High Wycombe HP11 2JZ, UK
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Department of Dosage Form Technology, Faculty of Pharmacy, Institute of Microbiology and Virology, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, Latvia
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Department of Economics and Finance, Università Cattolica del Sacro Cuore, Largo Agostino Gemelli 1, 20123 Milan, Italy
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Internal Medicine Department, University of Lorraine, 34, Cours Léopold, CS 25233, 54052 Nancy CEDEX, France
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University Hospital of Nancy, Rue du Morvan, 54511 Vandoeuvre-Lès-Nancy CEDEX, France
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Department of Economics, University of Messina, Piazza Pugliatti 1, 98122 Messina, Italy
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Centre for Health Economics & Medicines Evaluation, Bangor University, Bangor LL57 2PZ, UK
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Research Department of Primary Care and Population Health, Royal Free Medical School, University College London, London NW3 2PF, UK
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School of Medicine, Trinity College Dublin, College Green, D02 PN40 Dublin, Ireland
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Global Brain Health Institute, Trinity College Dublin, D02 PN40 Dublin, Ireland
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Global Brain Health Institute, University of Califonia, San Francisco, CA 94143, USA
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Warwick Medical School and Zeeman Institute, University of Warwick, Coventry CV4 7AL, UK
*
Author to whom correspondence should be addressed.
Retired.
Academic Editor: Edgaras Stankevičius
Medicina 2021, 57(3), 208; https://doi.org/10.3390/medicina57030208
Received: 8 January 2021 / Revised: 15 February 2021 / Accepted: 22 February 2021 / Published: 26 February 2021
(This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)
Background and Objectives: We have conducted a survey of academic and clinical experts who are participants in the European ME/CFS Research Network (EUROMENE) to elicit perceptions of general practitioner (GP) knowledge and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and suggestions as to how this could be improved. Materials and Methods: A questionnaire was sent to all national representatives and members of the EUROMENE Core Group and Management Committee. Survey responses were collated and then summarized based on the numbers and percentages of respondents selecting each response option, while weighted average responses were calculated for questions with numerical value response options. Free text responses were analysed using thematic analysis. Results: Overall there were 23 responses to the survey from participants across 19 different European countries, with a 95% country-level response rate. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result. The vast majority of GPs were perceived to lack confidence in either diagnosing or managing the condition. Disbelief, and misleading illness attributions, were perceived to be widespread, and the unavailability of specialist centres to which GPs could refer patients and seek advice and support was frequently commented upon. There was widespread support for more training on ME/CFS at both undergraduate and postgraduate levels. Conclusion: The results of this survey are consistent with the existing scientific literature. ME/CFS experts report that lack of knowledge and understanding of ME/CFS among GPs is a major cause of missed and delayed diagnoses, which renders problematic attempts to determine the incidence and prevalence of the disease, and to measure its economic impact. It also contributes to the burden of disease through mismanagement in its early stages. View Full-Text
Keywords: ME/CFS; myalgic encephalomyelitis; chronic fatigue syndrome; primary care; GP knowledge and understanding ME/CFS; myalgic encephalomyelitis; chronic fatigue syndrome; primary care; GP knowledge and understanding
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MDPI and ACS Style

Cullinan, J.; Pheby, D.F.H.; Araja, D.; Berkis, U.; Brenna, E.; de Korwin, J.-D.; Gitto, L.; Hughes, D.A.; Hunter, R.M.; Trepel, D.; Wang-Steverding, X. Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE). Medicina 2021, 57, 208. https://doi.org/10.3390/medicina57030208

AMA Style

Cullinan J, Pheby DFH, Araja D, Berkis U, Brenna E, de Korwin J-D, Gitto L, Hughes DA, Hunter RM, Trepel D, Wang-Steverding X. Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE). Medicina. 2021; 57(3):208. https://doi.org/10.3390/medicina57030208

Chicago/Turabian Style

Cullinan, John, Derek F.H. Pheby, Diana Araja, Uldis Berkis, Elenka Brenna, Jean-Dominique de Korwin, Lara Gitto, Dyfrig A. Hughes, Rachael M. Hunter, Dominic Trepel, and Xia Wang-Steverding. 2021. "Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)" Medicina 57, no. 3: 208. https://doi.org/10.3390/medicina57030208

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