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Poor knowledge of ME/CFS among doctors puts patients at risk of harm

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

Doctors with M.E. Founder and Director Dr. KN Hng, Director Dr. Keith Geraghty and Honorary Fellow Prof. Derek Pheby report their findings regarding ME/CFS knowledge and understanding amongst the medical community following an audit of hospital doctors at a training event in the UK.

The audit raises serious issues regarding the ability of doctors to correctly identify, diagnose and manage patients with ME/CFS. It is alarming that 98% of doctors believed Graded Exercise Therapy (GET) is a suitable treatment.  The few doctors who had expressed confidence in diagnosing or dealing with ME were found to be wholly wrong in their understanding of the nature of ME, its diagnostic criteria and its treatment. Also concerning is the fact that none of the doctors who had had teaching on ME, or experience of ME patients, knew that ME is purely a physical and not a psychological illness, compared to 40% among those who had never received such teaching or experience. This begs the question of what they were being taught about ME.

These findings highlight the need for urgent improvements in medical education and understanding regarding ME/CFS.  

“[This audit] has demonstrated areas of ignorance so considerable that patients treated on the basis of this would be put very much at risk.”

“Doctors need to be able to recognise ME regardless of their specialty, as it has such a wide range of symptoms and presentations. Not only does this audit demonstrate the great and urgent need for medical education on ME, which must be scientifically accurate and up-to-date, responses also demonstrate the appetite for it. More than half the respondents (56%) who answered this question wished to have more in-depth teaching on ME, and a total of 92% were amenable to it. Medical royal colleges and medical schools should take heed.”

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, 82% 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.

Citation

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

Dr. K.N. Hng

Founder

ST7 General Internal Medicine and Gastroenterology (Ret)
Author of ‘Doctor with M.E.: My journey with “Chronic Fatigue
Syndrome
“‘

MBChB, MRCP, PG Cert in WBME, FHEA

Dr. K.N. Hng is a British physician with ME/CFS. After falling ill with M.E. she authored the books Doctor with M.E.: My journey with “Chronic Fatigue Syndrome”, and M.E. and Me: A Doctor’s Struggle with Chronic Fatigue Syndrome for medical audiences.

Dr. Hng contributes to research, education and other collaborations. She led a group submission by over twenty experts, scientists, organisations and patients to NICE for the consultation on their new ME/CFS guideline.

Dr. Hng has produced many other resources which she makes available for free.  These resources are continually updated, and many are also available in multiple languages, with translation work ongoing.  This includes dissemination via one of the largest online communities focused on ME/CFS, which she established.

Dr. Keith Geraghty

Director

Honorary Research Fellow, Centre for Primary Care and Health Services Research, Faculty of Biology Medicine and Health, University of Manchester, Co-lead, NICE GDG commissioned Severe ME Research Group

BSc, BSc, PgDip, MPH, PhD

Dr. Keith Geraghty works as an honorary research fellow at the University of Manchester Centre for Primary Care and Health Services Research and is a founding contributor to Doctors with M.E. He studied at Cardiff University to PhD level, before going on to undertake medicine at the University of Leicester on their graduate-entry MBBS programme. Sadly he had to discontinue his medical studies and training after suffering ME/CFS for a number of years.

Keith holds Bachelor degrees in Management and Life Sciences (1st class), a Masters Diploma in Research Methods, a Masters of Public Health and a Doctorate in NHS Organisational Behaviour. He started his academic career as a research assistant at Imperial College London. He later joined the University of Manchester as a research associate and is currently Honorary Research Fellow. More recently, he has also worked with the ME/CFS Biobank team at the London School of Hygiene and Tropical Medicine.

He has written over 20 papers and articles on ME/CFS. He is an expert peer reviewer for the Cochrane Collaboration, the Medical Research Council, the National Institute for Health Research and a number of scientific journals. He is an associate editor of the journals BMJ Evidence-Based Medicine, the Journal of Health Psychology and Fatigue: Biomedicine Health and Behaviour. ME/CFS and medically unexplained symptoms are a major part of his ongoing research work.

Prof. Derek Pheby

Honorary Fellow

Visiting Professor of Epidemiology, Buckinghamshire New University, Founder, European ME/CFS Research Network (EUROMENE), Project Coordinator, National ME Observatory,