The Medical Schools’ Council coordinates medical schools’ teaching across the UK. We reached out to them to ask them to speak to medical schools about providing high-quality teaching on ME/CFS, to give a bit of background information about the condition, and to recommend some learning resources. The letter is posted below.
Recommended ME/CFS resources for medical educators (pdf)
Good morning, I’m writing to bring your attention to some important and difficult issues regarding undergraduate medical education on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and to share some resources for medical educators.
The scientific understanding of ME/CFS has moved forward by leaps and bounds in recent years, and standards of clinical practice have changed dramatically. The 2021 NICE guidance on ME/CFS is a radical departure from the 2007 guidance which preceded it.
Some examples of ways in which the scientific understanding of ME/CFS has changed in recent years:
- In the past ME/CFS has been viewed by some medical professionals as a not very serious condition which generally resolves on its own, like the flu. NICE now recognizes that ME/CFS is a very serious chronic illness with no cure.1 75% of sufferers are unable to work or attend school, and 25% are housebound.2
- In the past some have viewed ME/CFS as rare. In fact, according to NICE its pre-pandemic prevalence was about 0.4%3, and since 2019 the number of people developing ME/CFS following a covid-19 infection has continued to rise.4,5,6,7
- While the 2007 NICE guidance on ME/CFS put forward the view that the condition might be psychological or partly psychological, the 2021 guidance confirms that ME/CFS is a chronic illness which affects multiple body systems, with defects in the nervous and immune systems and in cellular metabolism.3,8
- While the 2007 NICE guidance on ME/CFS recommended cognitive behavioural therapy (CBT) as a curative treatment, the 2021 guidance confirms that CBT does not cure ME/CFS or treat its symptoms.9
- While the 2007 NICE guidance on ME/CFS recommended graded exercise therapy (GET), we now know that people with ME/CFS have an abnormal physiological response to exercise such that exercise can be uniquely harmful for them. ‘Pushing through’ the discomfort to stick to an exercise program causes post-exertional malaise and is associated with a permanent worsening of disease severity.10,11,12,13,14
- Even the name has been updated. In the past the term ‘chronic fatigue syndrome’ was widely used, but patient groups have argued that this term minimizes and stigmatizes what is in fact a very serious disease, while researchers have rejected it as overly vague and technically incorrect.
Unfortunately the new scientific understanding and clinical standards have not yet made their way into the medical education system. Studies show that:
- Most doctors have had no training on ME/CFS, and don’t feel confident treating patients who have the condition. Many have false beliefs about ME/CFS.16,17,18,19
- ME/CFS is not generally taught in medical schools at the undergraduate level, and medical students have little understanding of the condition.20,21,22
- In the world of medicine there exists a culture of stigma towards patients with ME/CFS.23,24,25,26,27
There’s a ray of hope in all this: ME/CFS is included in the MLA Content Map, and will therefore be taught to all undergraduate medical students starting in the 2024-2025 academic year.
However, simply adding ME/CFS to the syllabus is not enough. It’s not enough to simply mention the condition to medical students; it must be taught properly, by educators who are expert in the subject. I believe that a much greater than usual amount of planning and preparation will be required in order for medical schools to provide high-quality, up-to-date, evidence-based training on ME/CFS.
As they prepare to teach ME/CFS, medical schools will face several pitfalls:
- No teaching materials aimed at undergraduate students exist (as far as we are aware).
- Educators will likely have little knowledge of ME/CFS, and will therefore need to research and learn about the condition for themselves, before teaching it to their students.
- The false but widely-held belief that ME/CFS is either rare or not very serious (or both) might lead medical schools to allocate less time and resources to teaching the condition than are truly required.
- Stigma may hold educators back from giving ME/CFS the time and attention it deserves.
I’d like to ask the Medical Schools Council to bring these concerns to the UK medical schools well in advance of the 2024/2025 academic year, so they can be discussed, and so that solutions can be found.
To help with this, the ME/CFS Medical Education Campaign has put together a list of carefully selected learning resources which we are sure will be invaluable to any medical educator preparing to teach ME/CFS. The list is attached to this email.
I’d like to raise one further possible concern: medical schools might struggle to decide which subject area ME/CFS belongs to, and therefore which class it should be included in and who should teach it. ME/CFS is a multisystem disease that could plausibly belong to neurology, infectious diseases or internal medicine, among other subject areas, but it is seen as an ‘orphan’ disease that hasn’t been claimed by any medical specialty. Of course every medical school will resolve this as they see fit. However I’d like to make the suggestion that, practically speaking, ME/CFS could be seen as a generalist subject, for two reasons:
1. In practice, ME/CFS is treated and managed by GPs. There is no specialist doctor that patients can be referred to specifically to diagnose, treat, or manage ME/CFS. NHS specialist ME/CFS services do exist in some parts of the UK, but they are staffed by occupational therapists or nurses, not by doctors.
2. There is no clinical test for ME/CFS, and diagnosis is made based on symptoms.28 The most important skill for a doctor facing a patient who may have ME/CFS is the ‘old-fashioned’ skill of taking a careful history and ruling out alternative diagnoses.
Finally, I’d like to ask that, as much as possible, any plans that are made regarding medical training on ME/CFS be shared openly and transparently with the patient community. This community has endured decades of medical neglect, and we deserve to be informed of decisions which will affect our medical care in the future. In that spirit, I’ll publish this letter on our blog, and I’ll also publish any reply you send, unless you ask me not to.
Please feel free to contact me at any point if you’d like to discuss any of these issues further. Thanks very much for your time and attention.
References
‘NICE’ is used as shorthand for: NICE guideline [NG206] Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome. https://www.nice.org.uk/guidance/ng206
1. NICE 1.11.1
2. NICE Box 1
3. NICE Context
4. Bonilla H, Quach TC, Tiwari A, Bonilla AE, Miglis M, Yang PC, Eggert LE, Sharifi H, Horomanski A, Subramanian A, Smirnoff L, Simpson N, Halawi H, Sum-Ping O, Kalinowski A, Patel ZM, Shafer RW, Geng LC. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is common in post-acute sequelae of SARS-CoV-2 infection (PASC): Results from a post-COVID-19 multidisciplinary clinic. Front Neurol. 2023 Feb 24;14:1090747. doi: 10.3389/fneur.2023.1090747. PMID: 36908615; PMCID: PMC9998690.
https://www.frontiersin.org/articles/10.3389/fneur.2023.1090747/full
5. Friedman, K.J.; Murovska, M.; Pheby, D.F.H.; Zalewski, P. Our Evolving Understanding of ME/CFS. Medicina 2021, 57, 200. https://doi.org/10.3390/medicina57030200. https://www.mdpi.com/1648-9144/57/3/200
6. Arthur A. Mirin, Mary E. Dimmock & Leonard A. Jason (2022) Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications, Fatigue: Biomedicine, Health & Behavior, 10:2, 83-93, DOI: 10.1080/21641846.2022.2062169.
https://www.tandfonline.com/doi/abs/10.1080/21641846.2022.2062169
7. Davis HE, McCorkell L, Vogel JM, Topol EJ. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol. 2023 Mar;21(3):133-146. doi: 10.1038/s41579-022-00846-2. Epub 2023 Jan 13. PMID: 36639608; PMCID: PMC9839201. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9839201/
8. Marshall-Gradisnik S, Eaton-Fitch N. Understanding myalgic encephalomyelitis. Science. 2022 Sep 9;377(6611):1150-1151. doi: 10.1126/science.abo1261. Epub 2022 Sep 8. PMID: 36074854. https://www.science.org/doi/10.1126/science.abo1261
9. NICE 1.12.28 and Box 5
10. NICE Recommendations and NICE Box 2
11. Moore, G.E.; Keller, B.A.; Stevens, J.; Mao, X.; Stevens, S.R.; Chia, J.K.; Levine, S.M.; Franconi, C.J.; Hanson, M.R. Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Medicina 2023, 59, 571. https://doi.org/10.3390/medicina59030571.
https://www.mdpi.com/1648-9144/59/3/571
12. Lien K, Johansen B, Veierød MB, Haslestad AS, Bøhn SK, Melsom MN, Kardel KR, Iversen PO. Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome. Physiol Rep. 2019 Jun;7(11):e14138. doi: 10.14814/phy2.14138. PMID: 31161646; PMCID: PMC6546966. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6546966/
13. Mateo LJ, Chu L, Stevens S, Stevens J, Snell CR, Davenport T, VanNess JM. Post-exertional symptoms distinguish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome subjects from healthy controls. Work. 2020;66(2):265-275. doi: 10.3233/WOR-203168. PMID: 32568143. https://content.iospress.com/articles/work/wor203168
14. Schei T, Angelson A. The course of the illness for ME patients in Norway: What are the typical courses of the illness, and what worsen or improve them? English Summary. The Norwegian ME Association, March 2021.
15. NICE 1.11.2
16. NICE Context
17. Hng KN, Geraghty K, Pheby DFH. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina (Kaunas). 2021 Aug 27;57(9):885. doi: 10.3390/medicina57090885. PMID: 34577808; PMCID: PMC8464998. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8464998/
18. Pheby DFH, Araja D, Berkis U, Brenna E, Cullinan J, de Korwin JD, Gitto L, Hughes DA, Hunter RM, Trepel D, Wang-Steverding X. 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 (Kaunas). 2020 Dec 24;57(1):7. doi: 10.3390/medicina57010007. PMID: 33374291; PMCID: PMC7823627.
https://pubmed.ncbi.nlm.nih.gov/33374291/
19. Timbol CR, Baraniuk JN. Chronic fatigue syndrome in the emergency department. Open Access Emerg Med. 2019 Jan 11;11:15-28. doi: 10.2147/OAEM.S176843. PMID: 30666170; PMCID: PMC6333158.
https://pubmed.ncbi.nlm.nih.gov/30666170/
20. 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://pubmed.ncbi.nlm.nih.gov/34071264/
21. Reid, Victoria Alice; Muirhed, Nina. 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
22. 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. Epub 2013 Sep 20. PMID: 24058124. https://pubmed.ncbi.nlm.nih.gov/24058124/
23. NICE 1.1.2
24. Fennell, P.A.; Dorr, N.; George, S.S. Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected. Healthcare 2021, 9, 553. https://doi.org/10.3390/healthcare9050553.
https://www.mdpi.com/2227-9032/9/5/553
25. Froehlich L, Hattesohl DB, Cotler J, Jason LA, Scheibenbogen C, Behrends U. Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome. Journal of Health Psychology. 2022;27(10):2291-2304. doi:10.1177/13591053211027631. https://journals.sagepub.com/doi/10.1177/13591053211027631
26. Keith J. Geraghty & Charlotte Blease (2019) Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter, Disability and Rehabilitation, 41:25, 3092-3102, DOI: 10.1080/09638288.2018.1481149. https://pubmed.ncbi.nlm.nih.gov/29929450/
27. 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. Epub 2013 Sep 20. PMID: 24058124. https://pubmed.ncbi.nlm.nih.gov/24058124
28. NICE 1.4
ME/CFS Medical Education Campaign 