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.
|“||Sufferers of ME are often stigmatised and marginalised, as their conditions are not fully recognised by the Government or the medical profession. A number of my constituents suffer from ME. At least two have been bedridden for 30 years because of their condition, and their story is not uncommon.||”|
Patient abuse and mistreatment[edit | edit source]
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 illnessWith 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
Unethical policies and practices[edit | edit source]
Refusal of medical care[edit | edit source]
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[edit | edit source]
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[edit | edit source]
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[edit | edit source]
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[edit | edit source]
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[edit | edit source]
- 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, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade - (Abstract)
Personal experiences[edit | edit source]
- 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[edit | edit source]
- 2016, Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis - with Keith Geraghty
News, TV and media[edit | edit source]
See also[edit | edit source]
- Sophia Mirza
- Karina Hansen
- Biopsychosocial model
- Medically unexplained physical symptoms
- Stigma and discrimination
- Medical Abuse In ME Sufferers (MAIMES)
- The Mental Health Movement: Persecution of Patients?
- Pediatric ME/CFS
Learn more[edit | edit source]
References[edit | edit source]
- Hansard | UK Parliament (Jan 24, 2019). "Appropriate ME Treatment | 24 January 2019 Volume 653". hansard.parliament.uk. Retrieved Jan 25, 2019.
- Dimmock, Mary; Lazell-Fairman, Matthew (Dec 2015). "THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis" (PDF). Retrieved Nov 5, 2018.
- Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (Dec 2016). "Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences". Journal of health psychology. 21 (12): 2824–2837. doi:10.1177/1359105315587137. ISSN 1359-1053. PMC . PMID 26063209.
- Geraghty, Keith J.; Blease, Charlotte (Jun 21, 2018). "Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter". Disability and Rehabilitation: 1–10. doi:10.1080/09638288.2018.1481149. ISSN 0963-8288.
- Forward-ME (2017). "10 year surveillance report consultation comments | NICE CFS/ME guidelines" (PDF). Retrieved Feb 10, 2019.
- Blease, Charlotte; Carel, Havi; Geraghty, Keith (Aug 1, 2017). "Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome". Journal of Medical Ethics. 43 (8): 549–557. doi:10.1136/medethics-2016-103691. ISSN 0306-6800. PMID 27920164.
- Colby, Jane (2014). "False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)" (PDF). Tymes Trust.
- Speight, Nigel (2011). "Does graded exercise therapy cure ME?" (PDF). Tymes Trust. Retrieved Feb 10, 2019.
- Peters, Sarah; Wearden, Alison; Morriss, Richard; Dowrick, Christopher F; Lovell, Karina; Brooks, Joanna; Cahill, Greg; Chew-Graham, Carolyn (Dec 2011). "Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis". Implementation Science. 6 (1). doi:10.1186/1748-5908-6-132. ISSN 1748-5908. PMC . PMID 22192566.
there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better...
- Hawkes, Nigel (Jun 22, 2011). "The dangers of research into CFS/ME" (PDF). BMJ. 342 (d3780): 1392–1384. doi:10.1136/bmj.d3780.
- Tymes Trust (2003). "Our Lives Our Needs" (PDF).
- BBC news (Nov 8, 1999). "Panorama | Sick and Tired". news.bbc.co.uk. Retrieved Feb 12, 2019.
- Geraghty, Keith (Sep 23, 2016). "'PACE-Gate': When clinical trial evidence meets open data access". Journal of Health Psychology. PMID 27807258.
- Blease, Charlotte; Geraghty, Keith (Sep 15, 2016). "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent" (Journal of Health Psychology). doi:10.1177/1359105316667798.
- Gilje, Ann Marit; Söderlund, Atle; Malterud, Kirsti (Oct 2008). "Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study". Patient Education and Counseling. 73 (1): 36–41. doi:10.1016/j.pec.2008.04.001.
- Geraghty, Keith; Esmail, Aneez (Aug 1, 2016). "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?". British Journal of General Practice. 66 (649): 437-438. doi:10.3399/bjgp16X686473.
- Rowe, Peter C.; Underhill, Rosemary A.; Friedman, Kenneth J.; Gurwitt, Alan; Medow, Marvin S.; Schwartz, Malcolm S.; Speight, Nigel; Stewart, Julian M.; Vallings, Rosamund; Rowe, Katherine S. (2017). "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer". Frontiers in Pediatrics. 5 (121). doi:10.3389/fped.2017.00121. ISSN 2296-2360.
Sometimes disbelief in the authenticity of their child’s illness has led the non-custodial parent to report the custodial parent to social services as a potential case of child neglect or factitious and induced Illness/Munchausen’s syndrome by proxy. Members of the wider extended family who show disbelief in the illness can also cause problems, even from a distance."
- O'Leary, Diane (Feb 2019). "Ethical classification of ME/CFS in the United Kingdom". Bioethics. doi:10.1111/bioe.12559. ISSN 1467-8519.
- "Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome | Bioethics.net". www.bioethics.net. Retrieved Feb 10, 2019.
- Friedberg, Fred (Jan 2, 2020). "Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade". Fatigue: Biomedicine, Health & Behavior. 8 (1): 24–31. doi:10.1080/21641846.2020.1718292. ISSN 2164-1846.
- Marshall, Eileen; Williams, Margaret (Jun 16, 2006). "INQUEST IMPLICATIONS?" (PDF). Retrieved Feb 15, 2019.
- Blease, Charlotte; Geraghty, Keith (Dec 6, 2016). "Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis". BMJ blog. Retrieved Dec 4, 2018.