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Cullinan, John, Pheby, Derek F. H., Araja, Diana, Berkis, Uldis, Brenna, Elenka, de Korwin, Jean-Dominique, Gitto, Lara, Hughes, Dyfrig A., Hunter, Rachael M., Trepel, Dominic and Wang-Steverding, Xia 
ORCID: https://orcid.org/0000-0001-6915-2588
(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 (3).
ISSN 1010-660X
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Abstract
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.
| Item Type: | Article |
|---|---|
| Additional Information: | Data Availability Statement: De-identified responses to the survey questions are available on request from the corresponding author. Funding information: This article/publication is based upon work from COST Action “European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, EUROMENE, supported by COST (European Cooperation in Science and Technology). COST (European Cooperation in Science and Technology) is a funding agency for research and innovation networks. Its actions help connect research initiatives across Europe and enable scientists to grow their ideas by sharing them with their peers. This boosts their research, career and innovation. This research received no external funding. EUROMENE receives funding for networking activities from the COST programme (COST Action 15111), via the COT Association. www.cost.eu. Accessed 25 February 2021. |
| Uncontrolled Keywords: | chronic fatigue syndrome,gp knowledge and understanding,cfs,myalgic encephalomyelitis,primary care,medicine(all) ,/dk/atira/pure/subjectarea/asjc/2700 |
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| Depositing User: | LivePure Connector |
| Date Deposited: | 05 Nov 2024 18:30 |
| Last Modified: | 12 Nov 2024 14:31 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/97534 |
| DOI: | 10.3390/medicina57030208 |
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