Ethical issues

Ethical issues and unethical practices have affected patients with myalgic encephalomyelitis/chronic fatigue syndrome since at least the 1950s. In the UK, Dr Sarah Myhill has created the MAIMES petition to highlight the medical abuse experienced by many patients with ME/CFS.

Ethical issues include:
 * denial of social security/disability benefits for those too ill to work
 * medical neglect, including denying basic medical treatment or tests on the basis of the fact the person has ME/CFS
 * mentally ill, resulting in denial of medical care and disability aids, and limited / reduced disability or sickness payments
 * forced in-patient mental health treatment in patients without a mental health condition
 * large numbers of children with ME/CFS put on child protection and "at risk" registers and separated from their parents, who are investigated for child abuse and Munchausen syndrome by proxy
 * children too ill to attend school have been diagnosed with "Pervasive School Refusal Syndrome"

Prevalence
In the United Kingdom, one in five children with ME/CFS has child protection/safeguarding issues raised, with parents suspected or accused of intentionally fabricating the child's illness.

Notable studies

 * 2015, THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis


 * 2016, Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents’ Experiences


 * 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome | (Full text)

Talks, interviews and blogs

 * 2016, Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis - with Keith Geraghty