**1. Introduction**

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) affects around 250,000 patients in the United Kingdom (UK); it is twice as common as other diseases that feature in undergraduate curricula, such as Human Immunodeficiency Virus (HIV) and Multiple Sclerosis (MS). In a recent survey of 4038 ME/CFS patients, 62% stated they are not confident their General Practitioner (GP) understands the condition, and 18% of patients wait longer than six years for a diagnosis [1]. The impact of this disease on patients' wellbeing [2] and quality of life is significant compared with other diseases [3]; yet, between a third and half of GPs lack confidence in acknowledging, diagnosing and managing ME/CFS [4], and the disease is often incorrectly dismissed as psychosomatic [5].

**Citation:** Muirhead, N.; Muirhead, J.; Lavery, G.; Marsh, B. Medical School Education on Myalgic Encephalomyelitis. *Medicina* **2021**, *57*, 542. https://doi.org/10.3390/ medicina57060542

Academic Editors: Derek FH Pheby, Kenneth J. Friedman, Modra Murovska and Pawel Zalewski

Received: 27 March 2021 Accepted: 25 May 2021 Published: 28 May 2021

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**Copyright:** © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

Davenport et al. note that up to 90% of patients are undercounted, undiagnosed and under-treated [6].

ME/CFS is a complex, multi-system disease, diagnosed on a history of significant fatigue impairing function, post exertional malaise, unrefreshing sleep, orthostatic intolerance and/or cognitive impairment [7]. Unlike any other illness and disease, advice to exercise is contraindicated. Exercise in ME/CFS has been shown to result in symptom exacerbation, deterioration of cellular bioenergetics and increased disability. A growing number of recent studies demonstrate abnormalities in cognition, brain changes on spectroscopy scans, lower metabolic energy generation and altered immune system response as well as neuroinflammation following repeated exercise [8].

In 1998, The Chief Medical Officer (CMO) of the UK appointed an Independent Working Group (IWG) to investigate divergent clinical views of ME/CFS and dissatisfaction among patients and patient support groups about the paucity of medical services to deal with this disease [9]. The IWG, which was first to acknowledge the importance of the patient voice, published their report in 2002, recommending that: "improvements are needed in the education and training of doctors, nurses and healthcare professionals, especially in primary care; ME/CFS should be considered as a differential diagnosis and GPs and medical specialists should be able to provide basic guidance after diagnosing this condition".

Given that, 20 years later, patients and patient support groups continue to be dissatisfied with the healthcare community's response to ME/CFS, this study was undertaken to establish the extent to which medical schools are covering this subject in their curricula and, if possible, why healthcare professionals still seemingly struggle to understand ME/CFS or, in some cases, deny the existence of this disease other than as a mental health condition [4,5].

In November 2020, the UK's National Institute for Health and Care Excellence (NICE) issued new draft guidelines [10] on ME/CFS. These acknowledge that ME/CFS is a chronic multi-system medical condition with distinct clinical diagnostic criteria. Echoing the 2002 CFS/ME IWG report, NICE calls for significant improvements in the education of healthcare professionals with greater emphasis on the delivery of evidence-based training to represent current knowledge and the experiences of people with ME/CFS.

The fact that NICE in 2020 makes virtually the same recommendations as the IWG in 2002 demonstrates serious failures in medical education in ME/CFS over the past almost 20 years. European ME/CFS experts have expressed serious concerns about knowledge and understanding among primary care physicians, and survey responses demonstrated that 91% strongly agreed there should be more teaching about ME/CFS in undergraduate medical curricula [11].

This study establishes a baseline of how and to what extent the subject of ME/CFS is being taught in UK medical schools and reveals an exciting opportunity to research the pedagogy surrounding a paradigm shift in a disease narrative. Knowledge of this complex multi-system disease has been hindered by a failure to "move on". We can no longer describe ME/CFS as a figment of patients' unhelpful beliefs, and the burden of ME/CFS in the wake of COVID is an opportunity to learn [12]. Improved medical education on the topic of ME/CFS is urgently required to improve patient safety.

#### **2. Materials and Methods**

Approval of the UK Medical Schools Council was obtained before this study was undertaken. The study was advocated by Forward ME, Cardiff University and the CFS/ME research collaborative (CMRC).

A questionnaire comprising ten questions was developed to ascertain the extent of current teaching ME/CFS in all UK medical schools. The Medical Schools Council circulated a request to all 34 schools in the UK in October 2018, this invited schools to participate voluntarily in the study and providing them with a link to the online questionnaire (using

Survey Monkey). E-mail reminders were sent in February and March 2019. Not all schools responded, and some responded anonymously.

## **3. Results**

Out of a total of 34 schools, 22 responded (65%), of which 13 schools taught ME/CFS in their syllabuses (59%), leaving nine schools (41%) that did not.

#### *3.1. Teaching Methodology*

As Figure 1 shows, nine schools out of 13 (69%) taught by lecture, five used discussion and/or case study methods and some stated that the "Unrest" video [13] had been shown and formed a part of their discussions. E-Learning, tutorial and handouts were less frequently used. Some schools use more than one method; a single method was used by seven schools, two methods were used by five schools, and four methods were used by one school.

**Figure 1.** Teaching Methodology. ME/CFS, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

### *3.2. Teaching Duration*

The nine medical schools who responded that they do not teach this subject are included here as zero hours (h). Eight schools devoted between 1 and 2 h to teaching ME/CFS; two schools devoted more than 3 h while one school devoted less than 1 h to the subject; one school was unable to quantify teaching duration. See Figure 2.

#### *3.3. Part of Curriculum Covering ME/CFS Teaching*

On average, ME/CFS was taught within two parts of the curriculum, described here as medical disciplines. Figure 3 shows that ME/CFS across the 13 schools was taught by at least six different medical disciplines. The most common was General Practice (*n* = 5); followed by Chronic Disease, Neurology and Psychiatry (all *n* = 4), Rheumatology (*n* = 3) and Paediatrics (*n* = 1), details were not provided for 'other'.

**Figure 2.** Teaching Duration.

**Figure 3.** Disciplines Providing ME/CFS Teaching.

#### *3.4. Medical Specialists Leading Teaching of ME/CFS*

Various specialists provided the core of teaching for ME/CFS, as shown in Figure 4. Some supplied more than one specialist to teach the subject, seven schools referred to professors or senior teaching fellows without stating their area of expertise, and ten different specialists were listed. Psychiatrists (*n* = 5) and general practitioners (*n* = 4) were the dominant specialists in ME/CFS teaching, followed by rheumatologists (*n* = 3) and neurologists, general medicine and public health specialists (*n* = 2). ME/CFS teaching was also delivered by behavioural scientists, infectious disease specialists, ophthalmologists and clinical communicators (each *n* = 1).

**Figure 4.** Medical Specialists Leading Teaching of ME/CFS.

#### *3.5. Clinical Contact with ME/CFS Patients*

Only three schools out of 13 (23%) responded affirmatively to the inclusion of contact with ME/CFS patients as part of their curriculum.

#### *3.6. Examination Practices*

The following results relate to all 22 respondents irrespective of whether they taught ME/CFS in their curriculum. Seven schools out of 22 (32%) stated that they set questions on the subject in their examinations.

#### *3.7. Interest in Further Teaching Aids*

Fourteen schools out of 22 (64%) stated that they were interested in receiving further teaching aids on the subject of ME/CFS. Of the nine schools that do not teach ME/CFS, seven schools (78%) said they were interested in receiving further teaching aids or materials.

The most common teaching aid of interest was educational videos of 20–30 min duration, followed by e-learning module of 30–60 min duration or lecture with patient volunteers of 30–60 min duration. Each of these options was preferred by five schools (note: not necessarily by the same five schools). Three schools showed an interest in a lecture of 30–60 min duration. A total of 27 options were chosen by 14 schools, an average of almost two per school; see Figure 5.

**Figure 5.** Interest in Further Teaching Aids.
