**4. Discussion**

#### *4.1. Potential Bias*

The lack of response from some medical schools could bias the results of this study to over- or under-estimate the current teaching. Given the high level of undiagnosed sufferers with ME/CFS, the low level of confidence among GPs to be able to diagnose this disease [14] and the absence of patient satisfaction in the medical profession [1], it is plausible that 41% of medical schools do not teach ME/CFS. From the data gathered, the actual number of medical schools that cover this topic could lie be between 38% and 73%. This study would be more accurate with more respondents; however, the 64% overall response rate across the UK is greater than the 54% response rate in published research on ME/CFS teaching in medical schools in the United States [15] and other similar UK medical school surveys on ageing [16], neuroanatomy [17] and frailty [18], which had 19/30 (63%), 24/34 (70%) and 25/34 (74%) medical school responses, respectively. Another way of verifying if medical schools have timetabled teaching on ME/CFS would be to explore the existing data, already carried out for the 2014/15 academic year, with 47,258 timetabled teaching events in 25 UK medical schools [19].

#### *4.2. Teaching Time and Methodology*

Of the 59% that do cover ME/CFS, teaching duration is usually about one hour, it is not always examinable, and few augmen<sup>t</sup> their teaching with exposure to patients with the disease. One to two hours of teaching seems to be very low for a common chronic disease. A typical UK medical student receives 3960 timetabled hours of teaching during their five-year course [19]. Other research showed that the mean amount of core neuroanatomy teaching was 29.3 h [17], and the median time spent on teaching ageing and geriatric medicine was 55.5 h [16].

Another limitation of the study was the lack of information provided on what is being taught, which leaves us unable to comment on the quality and content of the teaching. Indeed, there is a risk that teaching could misrepresent the illness, or categorise it as psychosomatic. Therefore, teaching outdated content could be far worse than not teaching undergraduates about ME/CFS.

Little seems to have changed since a study in 2008 [20], which revealed "Family physicians obtain information about [ME/CFS] from their nonprofessional world which they incorporate into their professional realm". A more recent analysis of ME/CFS teaching

in one UK medical school [21] concluded that "Students acquired their knowledge and attitudes largely from informal sources and expressed difficulty understanding [ME/CFS] within a traditional biomedical framework", which is further evidence that education improvements proposed by IWG in 2002 have not been implemented.

#### *4.3. Medical School Curriculum*

Respondents were invited to send their syllabuses to enable a more detailed analysis of what is being taught about ME/CFS in their respective schools. A similar study undertaken in the United States revealed only 5.6% of medical schools were judged to deliver sufficient clinical, curricula and research on ME/CFS [15]. However, as no syllabus details were provided by any of the respondents and no explanations given, it was not possible to throw any light on why many healthcare professionals in the UK still struggle to recognise this disease, be able to diagnose it or agree upon suitable managemen<sup>t</sup> or treatments.

The wide spectrum of medical specialists that are involved in teaching ME/CFS, as revealed by this study, could explain why healthcare professionals remain confused. Whilst ME/CFS is a complex, multi-system disease that will continue to attract a variety of theories at a research level, there is no apparent reason why undergraduate medical students cannot be taught how to recognise and diagnose this disease and be able to make recommendations on its management. The over-riding priority in undergraduate teaching is to improve attitudes towards patients and acknowledgement of genuineness of the patient experience and validity of the disease. Some treatment approaches should have no place in undergraduate teaching; especially those that are shown to cause patient harm, delayed diagnosis and unsafe advice to exercise, as well as outdated assumptions such that dysfunctional beliefs, behaviours or even personality traits that are responsible for causing or perpetuating this illness [22].

#### *4.4. Medical Education Challenges*

Despite almost twenty years of stagnation, there is now a substantial need for ME/CFS medical education to "move on", and the 64% interest in further teaching aids is encouraging. It is proposed that the paradigm shift in international understanding of this condition [12], along with a lack of specialists, is an opportunity for medical educators to develop new teaching materials for medical schools to use in a flipped classroom model. Such materials, updated to reflect the latest biomedical science developments and patient perspectives, would transform what is taught. Regarding diagnosis and managemen<sup>t</sup> of ME/CFS, a recently developed online module [23] has shown that such measures significantly increase confidence in recognising diagnostic criteria. Teaching could be augmented with patient videos [24], webinars and podcast interviews to convey both the complexity and patient experience of this disease. Over the last twenty years, there have been huge strides in online communication, patient support groups on social media and the emergence of the 'patient expert'. The patient voice and perspective are also becoming central to medical education; there is an opportunity for medical schools to work with networks of patients and family members, who have an existing wealth of knowledge, to assist in augmenting future medical education.

This proposal would, furthermore, comply with the new NICE draft guidelines [10], which call for improvements in evidence-based education and training of healthcare professionals and better acknowledgment of the patient experience.

A much broader question arising from this study is why ten different specialties were involved in teaching this subject. Medical education is already moving away from specialty silos, but the secondary care system remains poorly equipped to manage the needs of patients with complex multisystem disease. ME/CFS patients are often cycled through multiple secondary care specialists, with the potential for each hospital visit to exacerbate their symptoms. Apart from the obvious economic drain on resources, the effect on patients and their families may explain why so many patients disconnect from the healthcare system. Clinicians with a knowledge and understanding of ME/CFS could reduce harm, save resources, improve patient care, limit delays to diagnosis and remove misplaced advice to exercise.

Based upon the findings in this study, the UK General Medical Council (GMC), which has statutory responsibilities under the Health Act 1983 for medical education curricula and standards, and the Medical Schools Council (MSC), which represents medical schools in various areas of common interest, are called upon to use their considerable influence to bring about changes in medical schools' undergraduate and postgraduate curricula so that doctors of the future are more capable of recognising, diagnosing and treating ME/CFS. Additionally, the GMC may also wish to consider recognition of ME/CFS as a specialty, which could also encompass post-viral fatigue and the growing subset of long Covid patients who present with ME/CFS.

The authors are not aware of any earlier study into the extent and nature of ME/CFS medical education across UK medical schools. This study therefore provides a baseline as to where UK medical education currently stands in relation to quantity, although it is difficult to comment on the content or quality of teaching in this subject.

#### *4.5. Further Research*

While this study is merely exploratory, it provides evidence that further research is required into what is being taught, whether this is evidence based, how it is assessed and how this might affect student knowledge and attitudes towards ME/CFS patients and their families.

Medical students from a variety of UK medical schools could be surveyed on their knowledge and perception of ME/CFS, what they have learned during medical school and how they think the undergraduate curriculum might adapt to improve ME/CFS education. The paradigm shift in ME/CFS literature and guidelines provides new opportunities for medical education research, which could be designed to measure changes in knowledge and/or attitudes and beliefs following updated teaching interventions. The lack of disease recognition and delays to ME/CFS diagnosis are not only a challenge in the UK, but also worldwide; this study and its findings are relevant to international colleagues researching ME/CFS education in other countries.
