Bioethics Blogs

Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome

Guest Post: Charlotte Blease & Keith Geraghty

Article: Epistemic injustice in healthcare encounters: Evidence from chronic fatigue syndrome by Blease, Carel, & Geraghty

Some illnesses are uncool.

That might sound like an inflammatory comment – especially for a medical journal, yet perhaps the biggest concealed fact in medicine is that hierarchies of diseases exist among patients and healthcare professionals. A caste system of illness influences how patients perceive their health complaints, whilst health professionals also hold biases that influence how they treat and rank patients in the medical pecking order.

When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs. The truth about CFS/ME is that it is a medically contested illness; the NHS and NICE guidelines acknowledge that there are massive gaps in our current understanding around the illness, its cause and its impact on patients. CFS/ME is also illness that can devastate lives, leaving many housebound, bedbound and isolated, not just from society but also in terms of medical support.

Acknowledgment about the limited knowledge about this illness (which, indeed, may turn out to be a cluster of different diseases or illnesses) is frequently overshadowed by disagreement about theoretical models of the aetiology and morphology of ME/CFS. Ramsay’s 1950s model of ME as a post-viral infection causing muscle weakness and neurological inflammation was challenged by psychiatrists McEvedy and Beard, as nothing more than mass-hysteria.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.