In the final blog in our series on like and dislike, Hugh Robertson-Ritchie meditates on the problem of certainty in mutual tensions between doctors and patients with Chronic Fatigue.
Many CFS/ME (chronic fatigue syndrome/myalgic encephalomyopathy) patients dislike their doctors, and many doctors dislike their CFS/ME patients. Why is this so? CFS/ME patients’ dislike of doctors follows from the wrong that is being done when these patients are subjected to inappropriate deficits of doctors’ credence. This wrong is towards these patients’ capacities as knowers regarding their testimony concerning the severity and the deleterious effects of their CFS/ME symptoms, and their understanding of the causes of these symptoms. Miranda Fricker sees such wrongs as testimonially and hermeneutically unjust. Concomitantly, some doctors dislike those CFS/ME patients who reject their advice about the widely-recommended medical treatments of psychological and exercise therapies for CFS/ME. In this blog, I give evidence for these dislikes, and argue that they can be explained by major (although under-acknowledged) uncertainties concerning CFS/ME, compounded by people’s differing and oppositional responses to those uncertainties.
What is CFS/ME? People with a CFS/ME diagnosis usually suffer the symptoms that include excessive fatigue, especially following exertion, for a long time, sometimes for decades. The symptoms of CFS/ME often greatly interfere with many aspects of people’s lives – work, family life, and social life. A significant proportion of CFS/ME patients are severely affected – they remain housebound or even bedbound for years. There is no known cause, and no known cure. There are no diagnostic tests, and the standard diagnostic criteria differ significantly from each other.
Because of the lack of objective evidence of abnormal biological processes in CFS/ME, many doctors support a biopsychosocial model (BPS), in which the causes of CFS/ME are said to be mostly psychological and behavioural. These doctors recommend cognitive behaviour therapy and exercise therapies.
CFS/ME patients experience the predominant symptoms are physical, so these people have an alternative theoretical model for CFS/ME, the biomedical model (BMM), which emphasises that theirs is a purely physical disease, and not a psychological condition (despite the present lack of adequate knowledge of the pathological processes). For these patients, psychological treatments are inappropriate, insulting, and don’t work. Exercise therapy makes their symptoms worse. As a CFS/ME patient Hannah Turner complains: “[There are] two treatment suggestions for ME: GET (graded exercise therapy), which is known in the ME community as "you'll get better if you stop being so lazy”, and CBT (cognitive behavioural therapy), a psychological treatment that continues to tout the belief that ME is all in our heads.”
Many CFS/ME patients dislike their doctors because they experience distress and dissatisfaction in their medical encounters, where doctors seem to say that CFS/ME patients don’t exercise enough, could well have nothing physically wrong with them, and may even be making everything up. Similarly, some doctors dislike their militant, ‘heartsinky’ CFS/ME patients when these patients choose to reject doctors’ advice, according to a survey conducted by the professor of applied health research Rosalind Raine and her colleagues.
Are these conflicts and dislikes due mainly to the personalities and behaviours of patients and/or of doctors? My alternative explanation is that these problems are mainly due to radical uncertainty about CFS/ME. First of all, here is no blood test or other test that can confirm who has CFS/ME and who does not. There is no generally-agreed definition, and no unique symptom that is shared by all CFS/ME patients and not present in other medical conditions. The mechanisms of CFS are unknown; most treatments fail most patients. Four decades of medical research have failed to reduce these radical uncertainties.
So, what can I suggest in order to ameliorate mutual unlikeability in CFS/ME healthcare interactions? I argue that, in the light of uncertainty and people’s different perspectives, both the BPS and the BMM interpretations are reasonable. However, I argue, in opposition to both sides, that the rejection of an oppositional interpretation is unreasonable. Doctors should follow the precepts of epistemic justice and accept CFS/ME patients’ testimony about their symptoms, and accept the plausibility of patients’ ‘physical disease’ interpretation. Similarly, CFS/ME patients need to see that, in the present absence of curative treatments, some patients may benefit from psychological and/or behavioural therapies. So, the compromising acceptance of both models is the route to reducing epistemic friction and breakdowns in encounters between doctors and CFS/ME patients.
Further Reading
Blease, Charlotte, Havi Carel and Keith Geraghty (2017), ‘Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome’, J Med Ethics. 2017 Aug;43(8):549-557. doi: 10.1136/medethics-2016-103691. Epub 2016 Dec 5. PMID: 27920164.
Geraghty, K., and C. Blease (2018). ‘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.
Raine, R., S. Carter, T. Sensky, and N. Black (2004), ‘General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study’. BMJ (Clinical research ed.), 328(7452): 1354–1357.
Thomas, Marie A. and Andrew P. Smith (2005), ‘Primary healthcare provision and Chronic Fatigue Syndrome: a survey of patients' and General Practitioners' beliefs’. BMC Fam Pract. 2005 Dec 13;6:49. doi: 10.1186/1471-2296-6-49. PMID: 16351714; PMCID: PMC1325235.
Turner, Hannah (2021) ‘There’s Currently No Cure for Long Covid or ME, but Only One Has Stigma Attached’, Daily Telegraph, London, 18 August 2021.
Hugh Robertson-Ritchie worked as a family doctor (general
practitioner) in the National Health Service in Kent, England for many years,
with a particular interest in teaching. He retired from medical practice in
2021. In 1996, he was awarded an MPhil
in the History of Medicine from Cambridge University. He obtained his MA (2020)
and PhD (2026) in philosophy at the University of Kent. His philosophical
interests concentrate on the application of philosophical analysis to disputes
and uncertainties in medicine.
