There are huge overlaps between the suffering in Long COVID when compared to ME/CFS. Organ damage aside, Long COVID study participants reported three common symptoms: fatigue, cognitive dysfunction, and post-exertional malaise (Davies et al, 2020). Nearly half of the participants had to reduce their workload due to their symptoms, and 22 percent were unable to work at all. Quality of life is also severely impacted (Poodle et al, 2021).
All this mirrors what happens to people with ME/CFS (NHS,2021). This is why the results of this study - An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis - are very concerning. It is a review of UK hospital doctors opinions and working knowledge of ME/CFS. It was undertaken in 2021.
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.
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.
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.
98% of doctors believed Graded Exercise Therapy (GET) is a suitable treatment.
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.
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.
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.
My concern is that as time goes on and no emphasis is placed on research into the underlying causes of Long COVID combined with doctors getting frustrated with not being able to offer long haulers treatments, that we will like so many before us get sidelined into the Cognitive Behavioural Therapy and Graded Exercise Therapy default pathway for the lack of alternative therapies. My other concern is that despite the huge numbers of people with Long COVID (and overwhelming amounts research publications and newspaper articles on the subject) even in 2021 there has been no change in knowledge and attitudes in the hospital doctors in the UK. Considering this is going to be a large proportion of their daily workload for many years to come they need educating - and fast.