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.
Highlights
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multisystem disorder that is characterised by a range of symptoms that can fluctuate in severity and change over time
A survey questionnaire was sent to national representatives and members of the EUROMENE Core Group and Management Committee in September 2020—see Supplementary Materials
The questionnaire included a number of separate questions relating to: (i) the existence of general practitioner (GP) patient lists and national guidance on treatment pathways; (ii) percentages of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) undiagnosed and presenting to a GP; (iii) percentages of GPs recognising, confident to diagnose, and confident to manage ME/CFS; (iv) percentages of patients diagnosed by GP, referred by GP to specialist care, and self-referring to specialist services; and (v) views on needs for teaching, training, reference literature, and referral centres
Summary
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multisystem disorder that is characterised by a range of symptoms that can fluctuate in severity and change over time. There are considerable difficulties in determining accurate prevalence and cost estimates, for a number of reasons These include differences in case definitions, lack of empirical information in much of Europe about incidence and prevalence, natural variation between populations in, for example, the proportion of severely affected people, the heterogeneity of national economies and health care systems and, perhaps most importantly, the unwillingness of many doctors, in primary care, either to recognise the condition as a genuine clinical entity or to diagnose it [2,3]. 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.
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