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)
<i>Background and Objectives</i>: 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 fatigu...
| Main Authors: | , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2021-02-01
|
| Series: | Medicina |
| Subjects: | |
| Online Access: | https://www.mdpi.com/1010-660X/57/3/208 |
| _version_ | 1797726313512960000 |
|---|---|
| author | John Cullinan Derek F. H. Pheby Diana Araja Uldis Berkis Elenka Brenna Jean-Dominique de Korwin Lara Gitto Dyfrig A. Hughes Rachael M. Hunter Dominic Trepel Xia Wang-Steverding |
| author_facet | John Cullinan Derek F. H. Pheby Diana Araja Uldis Berkis Elenka Brenna Jean-Dominique de Korwin Lara Gitto Dyfrig A. Hughes Rachael M. Hunter Dominic Trepel Xia Wang-Steverding |
| author_sort | John Cullinan |
| collection | DOAJ |
| description | <i>Background and Objectives</i>: 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. <i>Materials and Methods:</i> 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. <i>Results</i>: 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. <i>Conclusion</i>: 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. |
| first_indexed | 2024-03-12T10:43:49Z |
| format | Article |
| id | doaj.art-a0a2d7395ff74220b5d015efe20aa0b5 |
| institution | Directory Open Access Journal |
| issn | 1010-660X |
| language | English |
| last_indexed | 2024-03-12T10:43:49Z |
| publishDate | 2021-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Medicina |
| spelling | doaj.art-a0a2d7395ff74220b5d015efe20aa0b52023-09-02T07:54:41ZengMDPI AGMedicina1010-660X2021-02-015720820810.3390/medicina57030208Perceptions 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)John Cullinan0Derek F. H. Pheby1Diana Araja2Uldis Berkis3Elenka Brenna4Jean-Dominique de Korwin5Lara Gitto6Dyfrig A. Hughes7Rachael M. Hunter8Dominic Trepel9Xia Wang-Steverding10School of Business & Economics, National University of Ireland Galway, University Road, H91 TK33 Galway, IrelandSociety and Health, Buckinghamshire New University, High Wycombe HP11 2JZ, UKDepartment of Dosage Form Technology, Faculty of Pharmacy, Institute of Microbiology and Virology, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, LatviaInstitute of Microbiology and Virology, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, LatviaDepartment of Economics and Finance, Università Cattolica del Sacro Cuore, Largo Agostino Gemelli 1, 20123 Milan, ItalyInternal Medicine Department, University of Lorraine, 34, Cours Léopold, CS 25233, CEDEX F-54052 Nancy, FranceDepartment of Economics, University of Messina, Piazza Pugliatti 1, 98122 Messina, ItalyCentre for Health Economics & Medicines Evaluation, Bangor University, Bangor LL57 2PZ, UKResearch Department of Primary Care and Population Health, Royal Free Medical School, University College London, London NW3 2PF, UKSchool of Medicine, Trinity College Dublin, College Green, D02 PN40 Dublin, IrelandWarwick Medical School, University of Warwick, Coventry CV4 7AL, UK<i>Background and Objectives</i>: 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. <i>Materials and Methods:</i> 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. <i>Results</i>: 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. <i>Conclusion</i>: 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.https://www.mdpi.com/1010-660X/57/3/208ME/CFSmyalgic encephalomyelitischronic fatigue syndromeprimary careGP knowledge and understanding |
| spellingShingle | John Cullinan Derek F. H. Pheby Diana Araja Uldis Berkis Elenka Brenna Jean-Dominique de Korwin Lara Gitto Dyfrig A. Hughes Rachael M. Hunter Dominic Trepel Xia Wang-Steverding 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 ME/CFS myalgic encephalomyelitis chronic fatigue syndrome primary care GP knowledge and understanding |
| title | 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) |
| title_full | 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) |
| title_fullStr | 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) |
| title_full_unstemmed | 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) |
| title_short | 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) |
| title_sort | 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 |
| topic | ME/CFS myalgic encephalomyelitis chronic fatigue syndrome primary care GP knowledge and understanding |
| url | https://www.mdpi.com/1010-660X/57/3/208 |
| work_keys_str_mv | AT johncullinan perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT derekfhpheby perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT dianaaraja perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT uldisberkis perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT elenkabrenna perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT jeandominiquedekorwin perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT laragitto perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT dyfrigahughes perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT rachaelmhunter perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT dominictrepel perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene AT xiawangsteverding perceptionsofeuropeanmecfsexpertsconcerningknowledgeandunderstandingofmecfsamongprimarycarephysiciansineuropeareportfromtheeuropeanmecfsresearchnetworkeuromene |