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 Medical Abuse In ME Sufferers (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 Illness
 * children too ill to attend school have been diagnosed with "Pervasive Refusal Syndrome", or abnormal illness behavior
 * patients are blamed when treatments do not work
 * becoming very angry with patients, in one clinical trial some nurses viewed severely ill patients as "The bastards don't want to get better" ~ Nurse supervisor, FINE trial
 * medical professionals accuse patients of not wanting to recover or "benefitting" from their illness With these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better". ~ Sir Simon Wessely
 * patients labelled "resistant to treatment"
 * medical professionals being so convinced that a treatment would work that they accuse patients of not complying with it, or remove their diagnosis and misdiagnosis a psychiatric illness instead, for instance interpreting inability to wash or eat as self-neglect from Depression, or Pervasive Refusal Syndrome

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 in the UK 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 syndrome by proxy (Fabricated Induced Illness).

Research ethics complaints
A number of high profile researchers and some journals have faced compliants and investigations for research ethical violations, including:
 * PACE trial researchers for failing to declare their conflicts of interest to patients as part of the "informed consent" process, and failing to declare that the trial was partly funded by the UK's Department for Work and Pensions, which has responsibility for assessing disability entitlement
 * The University of Bristol announced that Professor Esther Crawley is being investigated for using research ethics exemption obtained for a single trial (offering treatment to school children with ME/CFS) for multiple unrelated research publications, including a systematic review of adults' ME/CFS treatment outcomes.
 * Refusing to release anonymous research data from controversial trials for re-analysis, or only allowed selected researchers access to that data, which avoids independent re-analysis or scrutiny, as happened with the PACE trial data. The PACE trial data - including the original primary outcome data - was only released after a lengthy battle and a hearing on front of a judge resulted in the UK's Information Commissioner Office ordering Queen Mary University to release the data under the Freedom of Information Act law.
 * Patient data was stolen during the PACE trial

Lack of informed consent
Keith Geraghty has highlighted the lack of informed consent to treatment experienced by many patients with ME/CFS, particularly involving failing to inform patients of previously known potential harms that may result from graded exercise therapy and cognitive behavioral therapy, and how likely these are.

Notable studies

 * 2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study (Abstract)
 * 2015, THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis


 * 2016, "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent"


 * 2016, Editorial - "'PACE-Gate': When clinical trial evidence meets open data access"


 * 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)
 * 2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade  - (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