The problems

Medical education on ME/CFS in the UK is of shockingly poor quality.

ME/CFS is an incurable illness that is more debilitating than multiple sclerosis, stroke, or lung cancer.1 75% of sufferers are unable to work or attend school, even part time.2 Prior to the pandemic the condition affected 0.4% of the population2; due to Long Covid that figure is now closer to 1%.3

Yet medical education on ME/CFS in the UK has not progressed in the past 20 years. 41% of UK medical schools don’t teach ME/CFS at all.4 A recent survey of UK medical students found that the participants were generally unaware of ME/CFS and its symptoms; the study’s authors concluded that: “Education on ME/CFS within UK undergraduate medical schools is currently inadequate.”5

A young white woman lies in bed. She wears an eye mask to block out light. The curtains are drawn but we can see it's daylight outside. There is a wheelchair near the bed.
A woman with ME/CFS lies in bed in a darkened room. Photo credit: Lea Aring and the German Association for ME/CFS.

Meanwhile, a 2021 survey of UK doctors found that 73% had learned nothing at all about ME/CFS during their training.6 And an earlier study of UK medical students found that they had received no formal training on ME/CFS at all, with students reporting that they felt the condition was “brushed under the rug” or “skimmed over”.7 

ME/CFS is a common condition, and unfortunately it is becoming more so as a result of the Covid-19 pandemic. Medical students will certainly be called upon to treat ME/CFS patients once they begin their careers. By failing to prepare them to treat these patients, medical schools are letting their students down.

Poor medical knowledge of ME/CFS causes real harm.

  • Patients can wait years for diagnosis because their doctors don’t recognize the symptoms.
  • Patients are routinely given inappropriate and harmful medical advice. For example, patients are advised to exercise, without being warned that exercise can cause post-exertional malaise (PEM), and in some cases can even lead to permanent relapse.
  • Patients’ symptoms are minimized; doctors insist that the symptoms are not really as bad as the patient claims.
  • Patients are wrongly told that their symptoms are psychological in nature.
  • Parents of children with ME/CFS have been threatened with having their children taken into care, because a doctor failed to provide a sick note excusing the child’s absence from school.
  • Patients with severe ME/CFS have been sectioned under the Mental Health Act, because doctors wrongly assumed that their inability to leave the house or care for themselves was caused by mental illness.
  • Patients with very severe ME/CFS sometimes become unable to swallow and require tube feeding, yet this is often delayed, placing the patient at risk of malnutrition, because hospital doctors do not realize that the patient is in fact severely ill.
  • Hospital staff fail to understand the sensory issues that often accompany severe ME/CFS, and fail to provide accommodations such as a quiet room and dimmed lights. This can cause post-exertional malaise and can lead the patient to relapse.
  • Loss of trust: many ME/CFS sufferers avoid seeing the doctor, or avoid going to hospital, because they believe (with justification) that such visits are more likely to harm than help them.

Solutions

We’re calling on medical schools to make sure that all their undergraduate students are provided with high-quality, up-to-date, evidence-based training on ME/CFS. We can help – please see our page for medical educators.

In the meantime, clinicians, educators and medical students can update their knowledge of ME/CFS using our learning resources page as a jumping-off point.

References

1. Mirin AA, Dimmock ME, Jason LA. Research update: The relation between ME/CFS disease burden and research funding in the USA. Work. 2020;66(2):277-282. doi: 10.3233/WOR-203173. PMID: 32568148. https://content.iospress.com/articles/work/wor203173.

2. NICE guideline [NG206] Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management: Context. https://www.nice.org.uk/guidance/ng206/chapter/Context.

3. Donna M. Mancini, Danielle L. Brunjes, Anuradha Lala, Maria Giovanna Trivieri, Johanna P. Contreras, Benjamin H. Natelson, Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post–Coronavirus Disease, JACC: Heart Failure, Volume 9, Issue 12, 2021, Pages 927-937, doi.org/10.1016/j.jchf.2021.10.002. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8629098/.

4. Muirhead N, Muirhead J, Lavery G, Marsh B. Medical School Education on Myalgic Encephalomyelitis. Medicina (Kaunas). 2021 May 28;57(6):542. doi: 10.3390/medicina57060542. PMID: 34071264; PMCID: PMC8230290. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8230290/.

5. Reid VA, Muirhed N. Investigating undergraduate medical education on myalgic encephalomyelitis/chronic fatigue syndrome. The British Student Doctor Journal vol 6; issue 1; 1 December 2022. https://thebsdj.cardiffuniversitypress.org/articles/308.

6. Hng KN, Geraghty K, Pheby DFH. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina 2021, 57, 885. doi: 10.3390/medicina57090885. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8464998/.

7. Stenhoff AL, Sadreddini S, Peters S, Wearden A. Understanding medical students’ views of chronic fatigue syndrome: a qualitative study. J Health Psychol. 2015 Feb;20(2):198-209. Doi: 10.1177/1359105313501534. https://pubmed.ncbi.nlm.nih.gov/24058124/.