Shockingly, most doctors receive no training at all on ME/CFS. As a result, many continue to believe (wrongly) that the condition is minor, self-resolving, psychological in nature, or simply made up. Acting on these beliefs, they dismiss their patients’ very real and very serious symptoms; mistakenly assume the symptoms are due to depression, anxiety or stress; fail to provide prompt diagnosis; and give dangerous advice to exercise and ‘push through’ – advice which is likely to provoke repeated bouts of post-exertional malaise, which in turn is associated with a permanent worsening of illness severity.
I’ve written an open letter about this to the chair of the Medical Schools’ Council (MSC), Patrick Maxwell. The MSC represents the UK medical schools. In the letter I demand high quality training on ME/CFS for all current medical students, to enable the next generation of doctors to provide evidence-based medical care to people with ME/CFS. The letter has so far been signed by about 180 people with ME/CFS and their carers, several of whom are doctors or scientists.
This issue affects those with long Covid as well. If future doctors are trained to understand the basics of ME/CFS they will know how to screen for post-exertional symptom exacerbation (PESE) or post-exertional malaise (PEM), and they will know not to recommend exercise programs which can harm patients.
The open letter is reproduced below. You can sign the open letter here.
18 July 2023
Dear Professor Patrick Maxwell, Chair of Medical Schools Council,
We’re writing to ask you to share, in detail, what actions the Medical Schools’ Council is taking to ensure the development of high quality training on ME/CFS for undergraduate medical students across the UK.
Studies show that, up until very recently, undergraduate medical education on ME/CFS has either been of poor quality, or non-existent. [1,2,3,4] There have recently been some exciting signs of positive change at a few UK medical schools, however we’re concerned that the majority of UK medical schools still fall short. Every school must urgently take on the challenge of developing training on ME/CFS to prepare students for the Medical Licensing Assessment, and more importantly to prepare them to provide high quality medical care to patients.
To facilitate this we’ve published an online guide to developing ME/CFS medical education which can be found at: https://mecfs-med-ed.org/medical-educators/. And we can put medical educators in touch with experts on ME/CFS who would be happy to advise them.
We’d like to emphasize that, although this may be just one educational topic among many to you, to the ME/CFS community the issue of medical education is one of deadly urgency. The lack of understanding of ME/CFS among medical professionals has caused and continues to cause tremendous harm to those living with the condition. This community is eagerly waiting to hear that the next generation of doctors will be properly trained so that in the future we will no longer have to endure disbelief, minimization of our very serious symptoms, medical neglect, and inappropriate or harmful therapies. We have every right to demand transparency and accountability from medical institutions.
Please respond and let me know what the Medical Schools Council is doing to drive the development of high quality medical education on ME/CFS. This is an open letter; we’ll publish it on our blog, and we’ll also publish any response you send, unless you specifically ask us not to.
Sincerely,
Katie Johnstone, founder of the ME/CFS Medical Education CampaignOn behalf of people in the ME/CFS community who have, through an on-line form, added their signatures below
References
1. 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/.
2. Reid VA, Muirhead 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.
3. 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/.
4. 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/.
ME/CFS Medical Education Campaign 
We need Doctors to be trained urgently. My relative was told to carry on exercising when in reality they should have been told to rest. More damage was done why waiting a diagnosis.
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