medical knowledge – American ME and CFS Society

Learning points about myalgic encephalitis/chronic fatigue syndrome

Abstract:

This essay examines the complex landscape of myalgic encephalitis, commonly known as chronic fatigue syndrome, highlighting its chronic and multisystemic nature with elusive causative factors. It discusses clinical challenges in diagnosis and management, emphasising the importance of increased education and awareness among healthcare professionals. The role of empathic, person-centred care in improving patient outcomes is underscored, urging for a paradigm shift towards understanding and addressing the profound impact of myalgic encephalitis/chronic fatigue syndrome on patients’ lives.

Source: Wahi-Singh B. Learning points about myalgic encephalitis/chronic fatigue syndrome: Bridging the gap between research, clinical practice and awareness. J R Coll Physicians Edinb. 2024 May 27:14782715241257968. doi: 10.1177/14782715241257968. Epub ahead of print. PMID: 38798182. https://journals.sagepub.com/doi/10.1177/14782715241257968 (Full text)

Investigating Access to Specialist Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) Services for Ethnic Minority Children

Abstract:

Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a relatively common, complex and disabling condition. CFS/ME is more common in ethnic minority adults, and is likely to be more common in ethnic minority children, but very few ethnic minority children access specialist CFS/ME services.

The aim of this PhD was to explore both the barriers and facilitators ethnic minority children face in accessing CFS/ME services, with an aim to make access more equal. Different methods were used: 1) systematic review, 2) data analysis, 3) qualitative interviews with young people, parents, community ‘influencers’, healthcare professionals, and 4) focus groups with community members.

I conducted a mapping systematic review to: (1) understand barriers ethnic minority children experience when accessing specialist medical services for chronic or mental healthcare conditions, (2) interventions to improve access. This synthesis describes the most common barrier to be ‘Knowledge’ but ‘Cultural Factors’ and ‘Stigma’ were also important. Interventions that focus on reducing multiple access barriers showed the most promise. This review also highlighted the role of facilitators, which informed the PhD.

Data analysis of the baseline characteristics of children who accessed specialist paediatric CFS/ME services and were recruited into a clinical trial showed only 3.93% of children described themselves as an ethnic minority, however data capture methods suggest ethnicity may not be accurately recorded.

Interviews with 25 participants (3 young people with CFS/ME; 5 family members, 14 community leaders and 3 medical professionals), and focus groups with 23 community participants were conducted and thematic analysis identified multiple barriers to accessing CFS/ME services, with three key barriers (‘Conceptualisation of CFS/ME’; ‘Cultural Factors’; and ‘Going to the Doctors’) and few facilitators. Terminology was also important, with “community leaders” declining the term “leader”.

Participants suggested the following ideas to improve access: 1) knowledge and awareness building initiatives to increase understanding of CFS/ME and reduce stigma and 2) healthcare system improvements, including more General Practitioner (GP) consultations, shorter waiting times, and staff of different ethnicities. Future work is needed to pilot these ideas to improve access and develop interventions.

Source: Catherine Linney Bristol Medical School Student thesis: Doctoral Thesis › Doctor of Philosophy (PhD) https://research-information.bris.ac.uk/en/studentTheses/investigating-access-to-specialist-chronic-fatigue-syndrome-myalg https://research-information.bris.ac.uk/ws/portalfiles/portal/306612306/REDACTED_Final_Copy_2021_12_02_Linney_C_PhD.pdf (Full text)

An audit of UK hospital doctors’ knowledge and experience of Myalgic Encephalomyelitis

Abstract:

Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards it.

Materials and Methods: Participants at the training event were asked to complete a questionnaire, enquiring about prior knowledge and experience of ME and their approaches to diagnosis and treatment. A total of 44 completed questionnaires were returned. Responses were tabulated, proportions selecting available options determined, 95% confidence limits calculated, and the significance of associations determined by Fisher’s exact test.

Results: Few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 91% of participants believed ME was at least in part psychological. Most participants responded correctly to a series of propositions about the general epidemiology and chronicity of ME. There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced as they were incorrect on the nature of ME, its diagnostic criteria and its treatment.

Conclusion: This audit demonstrates that most doctors lack training and clinical expertise in ME. Nevertheless, participants recognised a need for further training and indicated a wish to participate in this. It is strongly recommended that factually correct and up-to-date medical education on ME be made a priority at undergraduate and postgraduate levels. It is also recommended that this audit be repeated following a period of medical education.

Source: Hng KN, Geraghty K, Pheby DFH. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina. 2021; 57(9):885. https://doi.org/10.3390/medicina57090885 https://www.mdpi.com/1648-9144/57/9/885/htm (Full text)

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)

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.

Source: Cullinan J, Pheby DFH, Araja D, Berkis U, Brenna E, de Korwin JD, 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 (Kaunas). 2021 Feb 26;57(3):208. doi: 10.3390/medicina57030208. PMID: 33652747. https://www.mdpi.com/1010-660X/57/3/208 (Full text)

A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)

Abstract:

Background and Objectives: The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has conducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS;

Materials and Methods: A MEDLINE search was carried out. The papers identified were reviewed following the synthesis without meta-analysis (SWiM) methodology, and were classified according to the focus of the enquiry (patients, GPs, database and medical record studies, evaluation of a training programme, and overview papers), and whether they were quantitative or qualitative in nature;

Results: Thirty-three papers were identified in the MEDLINE search. The quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it. It should be noted, though, that these papers were mostly from the United Kingdom. Patient surveys indicated that a similar proportion of patients was dissatisfied with the primary medical care they had received. These findings were consistent with the findings of the qualitative studies that were examined, and have changed little over several decades;

Conclusions: Disbelief and lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact.

Source: Pheby DFH, Araja D, Berkis U, Brenna E, Cullinan J, de Korwin JD, Gitto L, Hughes DA, Hunter RM, Trepel D, Wang-Steverding X. A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE). Medicina (Kaunas). 2020 Dec 24;57(1):E7. doi: 10.3390/medicina57010007. PMID: 33374291. https://www.mdpi.com/1010-660X/57/1/7 (Full text)