Ethical classification of ME/CFS in the United Kingdom

Abstract

Few conditions have sparked as much controversy as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Professional consensus has long suggested that the condition should be classified as psychiatric, while patients and advocacy groups have insisted it is a serious biological disease that requires medical care and research to develop it. This longstanding debate shifted in 2015, when U.S. governmental health authorities fully embraced medical classification and management. Given that some globally respected health authorities now insist that ME/CFS is a serious biological disease, this paper asks whether it can be ethical for the U.K. practice guideline now in development to characterize the condition as a mental health disorder. Following a brief history of ME/CFS controversy, I offer three arguments to show that it would be unethical for the U.K. to now characterize ME/CFS as a mental health condition, considering the relevance of that conclusion for ME/CFS guidelines elsewhere and for other contested conditions.

Living with Chronic Fatigue Syndrome during lockdown and a global pandemic

“…Difficulties experienced by those with Chronic Fatigue Syndrome are exacerbated by social stigma and questions relating to the legitimacy of the condition [2,3]. In part, this reflects the extent to which the condition has often been historically ignored, belittled, and misunderstood, for example, when labelled in the media as 'yuppie flu' [4,5].…”

Advances in ME/CFS: Past, Present, and Future

“…Some countries lack awareness of ME/CFS (16), others subscribe to ME/CFS as treatable by changing the way the patient thinks and behaves through a CBT approach (17, 18), while some have embraced ME/CFS being an organic disease in practice (19) but fail to reach all patients and caregivers in need (20). Recently, O'Leary (21) has put forward the argument that despite a previous, long-term, professional consensus that CFS be classified as a psychosomatic illness, the insistence of globally respected health authorities that ME/CFS be treated as a serious, biological disease (1) raises ethical concerns as to whether efforts to continue treating ME/CFS as a mental disorder (in the U.K.) should continue.…”

Acknowledging and addressing the many ethical aspects of disease

“…As disease has many important moral functions as described above, there are vast and vivid debates on whether a condition is a disease or not and what kind of disease it is (e.g., somatic or mental). Obesity [70][71][72][73][74][75], grief [76][77][78], gender dysphoria [79], ADHD [80], ME/CFS [81,82], as well as aging [83][84][85] are but a few examples.…”