Ethical issues

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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. ”

—Mohammad Yasin, MP,  Appropriate ME Treatment debate (Jan 24, 2019)[1]


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Children with ME: The Story of B. Carol Monaghan, Appropriate ME Treatment debate, House of Commons 24th Jan 2019

Patient abuse and mistreatment[edit | edit source]

Experiences commonly reported include:

  • denial of social security/disability benefits for those too ill to work[2][3][4]
  • refusing to accept that a patient is ill, treating a patient as if they are lying or faking symptoms, lazy or unmotivated, and denying treatment[5]
  • medical neglect, including denying basic medical treatment, or tests or investigations on the basis of the fact the person has ME/CFS[3][2][4][6]
  • Medical gaslighting, including physical symptoms of illness being misdiagnosed as mental illness, resulting in denial of medical care or inappropriate treatments, and denial of disability aids, and limited / reduced disability or sickness payments[7][8]
  • forced in-patient mental health treatment in patients without a mental health condition[9][1] as experienced by Sophia Mirza
  • 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[10]
  • children too ill to attend school have been diagnosed with "Pervasive Refusal Syndrome", or abnormal illness behavior[11]
  • 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"[12] ~ Nurse supervisor, FINE trial
  • medical professionals accuse patients of not wanting to recover or "benefitting" from their illness[12]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[13]
  • patients labelled "resistant to treatment"[12]
  • 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, or severe gastrointestinal illness causing severe weight loss as anorexia

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.[6] 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.[14]

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.[15] 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).[16]

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.[citation needed]
  • 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.[17]
  • 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.[18]

Notable studies[edit | edit source]

  • 2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study[19] (Abstract)
  • 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer[21] (Full Text)
  • 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome[9] (Full text)
  • 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter[4] (Abstract)
  • 2019, Ethical classification of ME/CFS in the United Kingdom[22] (Abstract)
  • 2019, Faces of fatigue: Ethical considerations on the treatment of chronic fatigue syndrome[23] (Abstract)
  • 2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade[24] - (Abstract)

Personal experiences[edit | edit source]

Talks, interviews and blogs[edit | edit source]

News, TV and media[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 Hansard | UK Parliament (January 24, 2019). "Appropriate ME Treatment | 24 January 2019 Volume 653". hansard.parliament.uk. Retrieved January 25, 2019.
  2. ↑ 2.0 2.1 2.2 Dimmock, Mary; Lazell-Fairman, Matthew (December 2015). "THIRTY YEARS OF DISDAIN: How HHS and a group of psychiatrists Buried Myalgic Encephalomyelitis" (PDF). Retrieved November 5, 2018.
  3. ↑ 3.0 3.1 3.2 Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (December 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 4675701. PMID 26063209.
  4. ↑ 4.0 4.1 4.2 Geraghty, Keith J.; Blease, Charlotte (June 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. 41 (25): 3092–3102. doi:10.1080/09638288.2018.1481149. ISSN 0963-8288.
  5. ↑ Lapp, Charles W. (2019). "Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Frontiers in Pediatrics. 6. doi:10.3389/fped.2018.00415. ISSN 2296-2360.
  6. ↑ 6.0 6.1 Forward-ME (2017). "10 year surveillance report consultation comments | NICE CFS/ME guidelines" (PDF). Retrieved February 10, 2019.
  7. ↑ Hughes, Brian (March 21, 2019). "If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*". The Science Bit. Retrieved October 24, 2020.
  8. ↑ Mitchell, Natasha (October 22, 2020). "Doctors warn of lasting effects of COVID-19 after struggling to recover from virus". ABC News. Retrieved October 24, 2020.
  9. ↑ 9.0 9.1 Blease, Charlotte; Carel, Havi; Geraghty, Keith (August 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.
  10. ↑ Colby, Jane (2014). "False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)" (PDF). Tymes Trust.
  11. ↑ Speight, Nigel (2011). "Does graded exercise therapy cure ME?" (PDF). Tymes Trust. Retrieved February 10, 2019.
  12. ↑ 12.0 12.1 12.2 Peters, Sarah; Wearden, Alison; Morriss, Richard; Dowrick, Christopher F; Lovell, Karina; Brooks, Joanna; Cahill, Greg; Chew-Graham, Carolyn (December 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 3259041. 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...
  13. ↑ Hawkes, Nigel (June 22, 2011). "The dangers of research into CFS/ME" (PDF). BMJ. 342 (d3780): 1392–1384. doi:10.1136/bmj.d3780.
  14. ↑ de Carvalho Leite, JC; de L Drachler, M; Killett, A; Kale, S; Nacul, L; McArthur, M; Hong, CS; O'Driscoll, L; Pheby, D; Campion, P; Lacerda, E; Poland, F (2011), "Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis", International Journal for Equity in Health, 2 (10): 46, doi:10.1186/1475-9276-10-46, PMC 3229491
  15. ↑ Tymes Trust (2003). "Our Lives Our Needs" (PDF).
  16. ↑ BBC News (November 8, 1999). "Panorama | Sick and Tired". BBC News. Retrieved February 12, 2019.
  17. ↑ 17.0 17.1 Geraghty, Keith (September 23, 2016). "'PACE-Gate': When clinical trial evidence meets open data access". Journal of Health Psychology. 22 (9): 1106–1112. PMID 27807258.
  18. ↑ 18.0 18.1 Blease, Charlotte; Geraghty, Keith (September 15, 2016). "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent". Journal of Health Psychology. 23 (1): 127–138. doi:10.1177/1359105316667798.
  19. ↑ Gilje, Ann Marit; Söderlund, Atle; Malterud, Kirsti (October 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.
  20. ↑ Geraghty, Keith; Esmail, Aneez (August 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.
  21. ↑ 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."
  22. ↑ O'Leary, Diane (February 2019). "Ethical classification of ME/CFS in the United Kingdom". Bioethics. doi:10.1111/bioe.12559. ISSN 1467-8519.
  23. ↑ "Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome". Bioethics Today. Retrieved February 10, 2019.
  24. ↑ Friedberg, Fred (January 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.
  25. ↑ 25.0 25.1 Marshall, Eileen; Williams, Margaret (June 16, 2006). "INQUEST IMPLICATIONS?" (PDF). Retrieved February 15, 2019.
  26. ↑ Blease, Charlotte; Geraghty, Keith (December 6, 2016). "Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis". BMJ blog. Retrieved December 4, 2018.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

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