Sooyoung Lee is a FY1 in Nottingham.
As a medical student, I have had the privilege of experiencing multiple specialties in a short space of time. Being a medical student can be a time where you discover and assimilate the attitudes and values of being a doctor and figure out what kind of doctor you want to be.
Among the many positive aspects of this, one less desirable theme that I noticed was the negative attitudes towards patients with a background of medically unexplained symptoms such as chronic fatigue syndrome (CFS), also known as myalgic encephalomyeitis (ME), which appear to be widespread across the specialities. These negative attitudes were portrayed in the form of passing comments made by doctors about CFS/ME patients as being ‘difficult’, as well as dismissing the severity of the pain and/or fatigue experienced by them.
… the negative attitudes towards patients with a background of medically unexplained symptoms … appear to be widespread …
As part of my National Institute for Health Research internship, I conducted a short informal survey for students and doctors advertised on social media. The 34 responses highlighted the prevalent negative attitudes and lack of medical education on CFS/ME among doctors and medical students, with over a third of participants believing it is primarily a psychological disorder. This finding is confirmed by the existing literature suggesting the widespread disbelief and lack of knowledge of CFS/ME among GPs1 as well as the lack of medical education on CFS/ME.2
As doctors we strive and believe in high-quality care for all patients regardless of background. So why then are CFS/ME patients historically known to and currently suffer misunderstanding and dismissal?
There may be several reasons. There is a long history of teaching medicine in the traditional biomedical model, which limits conditions such as CFS/ME to be properly acknowledged, especially where we have yet to find biomarkers. It may be that the lack of robust scientific evidence and guidance on management has seeded scepticism in doctors. Furthermore, perhaps we have come across challenging patients with CFS/ME with poor mental health. But is this a cause for CFS/ME or an inevitable consequence of an untreatable debilitating long-term illness coupled with lack of empathetic understanding from doctors?
Whatever the root, we are all riddled with unconscious bias — defined as ‘social stereotypes about certain groups of people that individuals form outside their own conscious awareness’.3 This term is commonly used in the context of race; however, it could equally be applied to a group of people with a particular diagnosis.
The vast majority of us are guilty of inadvertently denying CFS/ME patients of the respect and care they deserve.
As a recent graduate, I can speak of how powerful the ‘hidden curriculum’ is in shaping students’ professional identity. ‘Hidden curriculum’ refers to the unwritten, unofficial, and often unintended lessons, values, and perspectives that students learn in the environment they are in.4 Doctors are role models, whether intended or not, and can be instrumental in shaping student’s attitudes and values, which can last a lifetime unless challenged.
The vast majority of us are guilty of inadvertently denying CFS/ME patients of the respect and care they deserve. I believe that we can play our part by developing awareness and reflecting on our own attitudes and how they may be affecting our spheres of influence.
Another important aspect to consider is advocating for the introduction of evidence-based teaching on CFS/ME in the medical curricula. Education is key to improving attitudes, and improved attitudes can increase patient satisfaction and consequently quality of care.5
Now seems to be a pertinent time to reconsider CFS/ME patients as well as our own attitudes towards them. With the explosion of research into long COVID syndrome — a phenomena that shares many characteristics with CFS/ME — as well as the new National Institute for Health and Care Excellence guidelines on the management of CFS/ME due to be released this year,6 let’s not forget CFS/ME patients, and give them hope for finding answers and for a better quality of care.
Sooyoung Lee would like to acknowledge the contribution from Dr Bakula Patel (Clinical Associate Professor in Primary Care Education) who proofread the article and made some minor edits.
1. Pheby DFH, Araja D, Berkis U, et al. 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 2021; DOI: https://doi.org/10.3390/medicina57010007.
2. Muirhead N, Muirhead J, Lavery G, Marsh B. Medical school education on myalgic encephalomyelitis. Medicina (Kaunas) 2021; 57(6): 542.
3. UCSF Office of Diversity and Outreach. Unconscious bias. https://diversity.ucsf.edu/resources/unconscious-bias (accessed 14 Jul 2021).
4. The Glossary of Education Reform. Hidden curriculum. 2015. https://www.edglossary.org/hidden-curriculum (accessed 14 Jul 2021).
5. Friedberg F, Sohl S, Halperin P. Teaching medical students about medically unexplained illnesses: a preliminary study. Medical Teach 2008; 30(6): 618–621.
6. National Institute for Health and Care Excellence. NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS. 2020. https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-continuing-debate-about-the-best-approach-to-the-diagnosis-and-management-of-me-cfs (accessed 14 Jul 2021).