Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe.. Cullinan et al, 2021

Andy · Mar 4, 2021

Full 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)

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.
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Open access, https://www.mdpi.com/1010-660X/57/3/208/htm

Sly Saint · Mar 4, 2021

ME/CFS experts report that lack of knowledge and understanding of ME/CFS among GPs
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the problem is worse than that as it also applies to a lot of the so-called CFS/ME 'experts'.

ME/CFS Skeptic · Mar 4, 2021

Some quotes from the paper:

https://twitter.com/user/status/1367569237485760512

2) “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.”

3) “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.”

4) “21 respondents (91%) strongly agreed that there should be more teaching about ME/CFS in undergraduate medical curricula.”

5) “Psychiatric involvement in specialist care was widespread. ME/CFS was perceived to be seen as a functional or psychiatric disease in Austria and Finland, and in Belgium psychiatrists were involved in care.”

ME/CFS Skeptic · Mar 4, 2021

It's interesting to get an overview of the different European countries:

Belgium has guidelines on diagnosis and clinical pathways from the government’s illness insurance programme. In Germany, there is a guideline on fatigue in general, which also covers ME/CFS, but it is said to be quite superficial and to lack understanding of the disease, and is therefore unhelpful. In Italy, a document was published in 2014 on behalf of AGENAS (the National Agency for Regional Health Services), which is part of the Health Ministry. It promotes a multidisciplinary approach to ME/CFS, with advice on aetiology, physiopathology, clinical features, diagnosis, and treatment. Practice in the Netherlands was reported to be based on American guidance from 2015. This likely refers to guidance published by the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), entitled “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness”, and summarised in a guide for healthcare providers [6]. Norway published guidance in 2014, and this was revised in 2015. It covers interdisciplinary investigation, diagnosis, treatment, rehabilitation and care, in various care locations (outpatients, inpatients, rehabilitation institutions, and self-management programmes) [7]. In Slovenia, EULAR recommendations for the management of fibromyalgia are followed [8]. In Spain, the public health system published a guide in 2019, but this guide was withdrawn, and patient associations and doctors who treat patients with ME/CFS have requested a complete review ....
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The situation in the Netherlands isn't adequately described - there is a decent 2018 report by the Health Council but an old guideline promoting GET and CBT is still in place. There has been an announcement that it will be updated and that the NICE guideline will be used as a starting point. More info here: https://www.zorginstituutnederland....sche-vermoeidheidssyndroom-op-meerjarenagenda

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Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe.. Cullinan et al, 2021

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Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe.. Cullinan et al, 2021

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