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.

https://www.youtube-nocookie.com/watch?v=5HzZ4U6yU6o&autoplay=0&rel=0

Patient abuse and mistreatment
Experiences commonly reported include:
 * denial of social security/disability benefits for those too ill to work
 * medical neglect, including denying basic medical treatment, or tests or investigations 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/Fabricated Induced Ilness
 * children too ill to attend school have been diagnosed with "Pervasive Refusal Syndrome", or abnormal illness behavior

Refusal of medical care
The poor treatment of people with ME/CFS has often widespread because of specific government policies or practices. For example, in 2007 the United Kingdom published a "best practice" guide to diagnosis and treatment which claimed investigating medical symptoms of any kind reported by people with ME/CFS might be harmful to those patients, resulting in the refusal of basic medical tests and harm from additional illnesses that were left untreated as a result. This advice remained in place for over 11 years.

Social care and disability benefits
A report from the CFS/ME Observatory project in the UK found that the knowledge, behaviors and attitudes of health and social care staff often led to patients not being diagnosed for years, and as a result struggling to access essential social care, health care or disability benefits. People identifying as Black, Asian or from ethnic minorities found it even harder to get a diagnosis and appropriate care. Some people reported being incorrectly diagnosed with anxiety or depression while their ME/CFS symptoms were ignored, and offered only antidepressants as a result. The UK social security disability assessment process was described as being unsuitable for assessing ME/CFS.

Prevalence of false child abuse allegations
In the United Kingdom, a small survey of children with ME/CFS found that 25% of children had bee a doctor or another professional that their parents/carers were the cause of their illness; some of these had children protection/safeguarding issues raised as a result of their illness. A survey after a 1999 UK documary also revealed that many parents or carers had been suspected or accused of intentionally fabricating their child's illness, 4% of families who responded to the survey reported a parent being labeled as having Munchausen’s by proxy.

Notable studies

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


 * 2016, "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?"


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


 * 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (Full Text)


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


 * 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter (Abstract)
 * 2019, Ethical classification of ME/CFS in the United Kingdom (Abstract)
 * 2019, Faces of fatigue: Ethical considerations (Abstract)

Personal experiences

 * 2006, INQUEST IMPLICATIONS? According to the letter, the clinicians involved in advising the hospital were psychiatrist Simon Wessely and psychologist Trudie Chalder.

Talks, interviews and blogs

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

News, TV and media

 * Sick and Tired - Panorama
 * 2015, M.E. parents' fury at child abuse claims

Learn more



 * False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) - Tymes Trust