Doctors are currently underprepared for care of patients with Myalgic Encephalomyelitis (ME/CFS) and medical education in this area is deficient. ME/CFS is a complex, chronic multi-system condition which affects at least 250,000 people in the UK, and frequently develops following a viral infection.(1)(2) Importantly, a growing number of people living with chronic disease following Covid-19 infection (Long Covid) present with a similar clinical phenotype to ME/CFS.(3)
The hallmark symptom of ME/CFS is Post Exertional Malaise (PEM), meaning the affected person experiences pronounced worsening of their condition following physical and cognitive exertion, which is disproportionate to the level of the exertion. Affected people must pace their mental and physical activities within a narrow window of energy expenditure to avoid exacerbation. Associated features can include orthostatic intolerance, sensory hypersensitivity, allergic symptoms, pain, and co-morbid autoimmune disorders.(4) Its multi-system nature means that ME/CFS does not fit neatly into the remit of any one medical specialty. Quality of life for people with ME/CFS is poor, and 25% sufferers are virtually or completely bedbound.(5)
ME/CFS is associated with verifiable pathology including autonomic dysfunction, reduced cerebral blood flow, increased immune system activation, and disordered hypothalamic-pituitary-adrenal function.(4) Current streams of biomedical ME/CFS research include investigating genetic predisposition(6) and mitochondrial dysfunction.(7) Despite this, many doctors mistakenly believe ME/CFS to be a psychological disorder or that there is no objective evidence of physical pathology.(8)
The lack of appropriate medical knowledge is elucidated by recent studies of ME/CFS medical education. For example, up to one half of GPs across Europe were found not to accept ME/CFS as a physical illness or felt they lacked the skills to manage and diagnose it;(9),(10) most UK postgraduate medical trainees in a survey reported having no formal teaching on ME/CFS, and lacked understanding of effects of disease on patient function;(11) only a small number of UK medical schools reported likely undergraduate clinical exposure to patients with ME/CFS for their medical students.(12) The need for better medical understanding is imperative now due to the ongoing increase in those living with post-viral illness. Approximately 10% people develop Long Covid after Covid-19 infection.(13) Many of those with Long Covid have found that health professionals are unprepared and under-resourced for managing the heterogenous and multi-system nature of their post-infectious illness, which can include chronic post-viral fatigue and PEM.(3)
Institutional attitudes towards ME/CFS are changing, as reflected in the NICE 2021 ME/CFS clinical guideline which emphasises the importance of pacing to avoid PEM, and clearly states that Graded Exercise Therapy should not be offered, and cognitive behavioural therapy is not a treatment for the disease.(14) The acknowledgement that this physical illness cannot be cured with psychological or behavioural therapies is a tremendous forward step.
The medical community must now act to ensure services are fit to provide the generalist, comprehensive care required for patients’ needs. This must be built through quality medical education which equips doctors with the vital skills and knowledge to manage complex post-infectious illness including ME/CFS and Long Covid.
- Nacul L, Lacerda EM, Pheby D, et al. 2011. Prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in three regions of England: A repeated cross-sectional study in primary care. BMC Medicine, 9:91 DOI: 10.1186/1741-7015-9-91
- 2020eHealth. 2017. Counting the cost: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Available at:
https://meassociation.org.uk/wp-content/uploads/2020Health-Counting-the-Cost-Sept-2017.pdf [accessed 4 th December 2021]
- Nurek M, Rayner C, Freyer A, et al. 2021. Recommendations for the recognition, diagnosis, and management of long COVID: a Delphi study. British Journal of General Practice, 71(712):e815-e825. doi: 10.3399/BJGP.2021.0265.
- Carruthers BM, van de Sande MI, De Meirleir KL, et al. 2012. Myalgic encephalomyelitis – adult & paediatric: International consensus primer for medical practitioners. Available at: https://www.me-international.org/uploads/1/2/7/6/127602984/me_icprimer_2012.pdf [accessed 4th December 2021]
- 25% ME Group. 2021. What is severe ME? Available at: https://25megroup.org/me [Accessed 4th December 2021]
- DecodeME. 2020. DecodeME: The ME/CFS Study. Available at: https://www.decodeme.org.uk/ [Accessed 4 th December 2021]
- Morton Group Oxford. 2020. The Morten Group, University of Oxford. Available at: https://www.mortengroup.org.uk/ [Accessed 4 th December 2021]
- Geraghty K. 2020. The negative impact of the psychiatric model of Chronic Fatigue Syndrome on doctors’ understanding and management of the illness. Fatigue: Biomedicine, Health & Behavior, 8(3): 167-180. https://doi.org/10.1080/21641846.2020.1834295
- Pheby DFH, Araja D, Berkis U, et al. 2021. A literature review of GP knowledge and understanding of ME/CFS: A report from the socioeconomic working group of the European Network on ME/CFS (EUROMENE). Medicina, 57(1): 7. https://doi.org/10.3390/medicina57010007
- Cullinan J, Pheby DFH, Araja D, et al. 2021. Perceptions of European ME/CFS experts concerning knowledge and understanding of ME/CFS among primary care physicians in Europe: A report from the European ME/CFS Research Network (EUROMENE). Medicina, 57(3): 208. https://doi.org/10.3390/medicina57030208
- Hng KN, Geraghty K, Pheby DFH. 2021. An audit of UK hospital doctors’ knowledge and experience of Myalgic Encephalomyelitis. Medicina, 57(9): 885. https://doi.org/10.3390/medicina57090885
- Muirhead N, Muirhead J, Lavery G, Marsh B. 2021. Medical school education on Myalgic Encephalomyelitis. Medicina, 57(6):542. https://doi.org/10.3390/medicina57060542
- Office for National Statistics. 2021. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 April 2021. Available at:
https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1april2021 [Accessed 4 th December 2021]
- National Institute for Health and Care Excellence. 2021. Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: diagnosis and management. Available at: www.nice.org.uk/guidance/ng206 [Accessed 4th December 2021]