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Parliamentary Question & ME/CFS Medical Education

On 8th June 2021, Helen Whately MP as Minister of State (Department of Health and Social Care) provided a written reply to a written parliamentary question from Caroline Lucas MP on behalf of Sussex & Kent ME/CFS Society:

Q: To ask the Secretary of State for Health and Social Care, what UK medical school teaching is provided on the chronic fatigue syndrome known as ME; whether he has plans to issue guidance on that matter; and if he will make a statement. Tabled on 24 May 2021.

A: Each medical school in England sets its own undergraduate curriculum which must meet the standards set by the General Medical Council (GMC), as the regulator of the medical profession, in its Outcomes for Graduates. The GMC expects that, in fulfilling these standards, newly qualified doctors are able to manage care needs relating to chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). CFS/ME is also specifically included in postgraduate medical curricula for specialties where it is most likely to be encountered, including general practice, paediatrics, tropical medicine and allergy and immunology. The Government currently has no plans to issue guidance.

The pivotal role of GPs in the diagnosis and management of ME/CFS as the ‘gatekeepers to the NHS’ is well known and the draft NICE guideline ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome’ (November 2020) makes clear (s 1.15) that:

Health and care providers should provide access to training that reflects current knowledge in ME/CFS (including understanding what ME/CFS is, diagnosis and management) for all health and social care staff who deliver care to people with ME/CFS.

Medical education has long been acknowledged as an area of concern – it was highlighted as far back as 2002 when The Chief Medical Officer’s Independent Working Group published its report and recommended that “improvements are needed in the education and training of doctors, nurses and healthcare professionals…” Indeed, the draft NICE guideline specifically envisages evidence-based content and training methods (developed and supported by specialist services with input from people with ME/CFS), run by trainers with relevant skills, knowledge and experience, and that the content represents the experiences of people with ME/CFS. As the supporting documentation to the draft guideline states:

Health & Care Providers highlighted the need for training in how to diagnose and manage ME/CFS, with a preference for an internet-based course. GPs suggested that ME/CFS specialist services should support GPs by providing them with information and training. There is currently little or no formal training on ME/CFS in the medical curriculum, with students claiming their knowledge often comes from media.

The dearth of Continuing Professional Development (CDP) training for current GPs has been aleviated somewhat by the launch of StudyPRN’s free course which composes 10 clinical cases assessing GPs’ knowledge of ME/CFS and which attracts 1 hour/1 credit of CPD (out of 50 recommended annually) on successful completion of the resource. However, what of medical students who claim knowledge arises not from their university studies but from the media? Appropriate teaching of the healthcare professionals of the future on the basis of current research is surely to be encouraged. This is especially so given the rise in research activity in ME/CFS and the shift in thinking concerning the illness over the past few years – an illness landscape which many current GPs would not (or will not) recognise. Many patients with ME/CFS report disbelief of their illness – and sometimes hostility to the notion of ME/CFS as being a physical illness – by their GPs, the very people who are paid to care for them. NICE itself acknowledges that in a GP practice of 100,000 patients there will, on average, be 40 patients with ME/CFS and so training proto-GPs on an illness they will encounter in their working lives would seem an area deserving of action.

What is the state of ME/CFS education in the UK’s medical schools?

Dr Nina Muirhead (who also helped create the CPD module) has co-authored a paper on ‘Medical School Education on Myalgic Encephalomyelitis‘ which was published on 28th May 2021. It makes for sober reading. A questionnaire was sent to the thirty-four medical schools in the UK and collected data for the 2018/19 academic year.

  • Twenty two schools responded (65%)
    • Thirteen of these (59%) featured ME/CFS on their curriculum.
    • Learning was delivered in a number of ways, ranging from 4 methods by one school to one method being used by seven schools. Lectures were the most common method (69% or 9/13); case studies and/discussions (38% or 5/13), with e-learning, handouts and tutorials formed the remainder.
    • Various specialists provided the core of teaching. Some schools supplied more than one lead provider whilst others did not state their area of expertise. Ten medical specialities were given, including behavioural science, infectious diseases and ophthalmology (1 each), while psychiatry (5) and general practice (4) were most common.
    • Seven schools (32%) set examination questions on ME/CFS.
    • Three (14%) reported ‘likely’ clinical exposure to ME/CFS patients.
    • 66% would be interested in receiving further teaching aids in ME/CFS, the most common item of interest being short (20–30 min.) videos followed by an e-learning module.
    • None of the respondents provided details of their syllabuses and so it was not possible to ascertain the content of the courses being offered.
    • Nine (41%) do not teach ME/CFS on their syllabus, of which 78% nevertheless stated an interest in receiving teaching aids or materials.
  • Twelve schools (35%) did not return the questionnaire and so the status of ME/CFS education is unknown in these institutions.
  • Taking the 34 schools in total and counting the non-responders as delivering zero hours of teaching:
    • 41% of medical schools delivered no hours of ME/CFS education to their students.
    • 5% delivered 0–1 hour.
    • 36% delivered 1–2 hours.
    • 5% delivered 2–3 hours.
    • 9% delivered in excess of 3 hours.
    • 5% did not state hours.

Conclusions

UK medical education in ME/CFS is inadequate and does not appear to have progressed since the Independent Working Group’s report in 2002. In summary, the authors state:

Of the medical schools responding, 41% do not teach the subject at all. Data on the 59% of the medical schools that do cover ME/CFS show that education is delivered by multiple medical specialists, mostly by lectures of one-hour duration, which is not always examinable and often takes place without any exposure to patients with the disease.

The authors urged that, given the acknowledged demand from all medical schools for improved educational tools, the General Medical Council and the Medical Schools’ Council should bring their influence to bear and bring about change in medical schools’ ME/CFS curricula.

The reliance of the Minister of State (Department of Health and Social Care) on ME/CFS being taught at postgraduate level, and without any guidance as to content or duration of teaching, does not match the needs of GPs, let alone the needs of patients with ME/CFS. The requirements of the draft NICE guideline are welcome, but care will be needed to ensure delivery of practical, modern, consistent education which will have a positive impact on the lives of those with ME/CFS.