Medical gaslighting

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

Medical gaslighting is term used to describe doctors or medical practitioners who wrongly deny a patient's illness entirely, for example wrongly telling patients that they are not really sick, or blame a patient's physical illness or symptoms on psychological factors.[1][2][3][4]


Gaslighting refers to a type of manipulation where the intent is to lead someone to question their own experiences, memory, or perceptions. Gaslighting is viewed as a form of emotional abuse.[5]

Effects[edit | edit source]

Psychological effects of gaslighting

People experiencing gaslighting often begin to question their own reality or may feel "crazy", particularly if the person gaslighting them has greater authority or personal power.[6] Gaslighting almost always involves multiple incidents and is particularly effective if several different people gaslight the same person.[7] Victims of gaslighting may become anxious, develop depression or mental illness, or become increasingly emotional as a result, which makes them more likely to be seen having unreliable or questionable judgement, both by others and themselves, discrediting them further. Gaslighting may result in a loss of trust, and isolation.[6]

Gaslighting by medics is more commonly experienced by certain patient groups, particularly women, and in illnesses which do not yet have a clear diagnostic tests, for example ME/CFS, chronic pain, and endometriosis. This form of gaslighting may be done either consciously or unconsciously.[7]

ME/CFS[edit | edit source]

ME/CFS patients who have experienced a dismissive attitude from a health care professional.
Source: Health Care Women Int. 2019 Mar; 40(3): 241–258.[8]

People with ME/CFS typically experience healthcare professionals who dismiss or ignore their health problems,[9] or attribute their ME/CFS symptoms as coming from a psychological rather than physical cause, leading to inappropriate treatments, such as focusing patients'"beliefs about the illness" rather than medical treatment of the symptoms.[10][8][11][12] Some doctors have also made claims that patients are not really sick, or have tried to discredit them by suggesting they are exaggerating the extent of their illness.[13]

Long COVID[edit | edit source]

Some Long COVID patients have experienced gaslighting, particularly when a doctor or healthcare professional does not find a clear biological (organic) causes for their long COVID symptoms.[14][15] Perkins and Jason give as example:

Healthcare professionals might say they are sorry that "you feel" or "you believe" that there is something wrong, but then are quick to inform the patient that their physical exam or blood work has come out normal. In a patronizing style, patients are sometimes told they will feel better taking anti-depressants or just exercising. These types of treatments might be appropriate for those with a Major Depressive Disorder, but patients with long COVID, as well as ME/CFS, may be being gaslit, and these insensitive and harmful interventions can produce irrevocable harm. We also know that women and people of color receive poorer quality care.[14] — Perkins and Jason, Long COVID and Gaslighting, Psychology Today

Blaming patients and carers[edit | edit source]

Some health professionals, including doctors, have stated that they believe ME/CFS is a behavioral disorder, and in one unsuccessful clinical trial of psychological therapy for severely ill patients, some nurses blamed patients when the treatment involving behavioral change failed, claiming they were "bastards" who just "don't want to get better".[16][12] Some nurses had become totally convinced that the psychological and behavioral treatment would work, and that patients were well enough to be able to follow it, that they appeared to lose sight of the fact they were part of a clinical trial to determine if the treatments worked.

Some carers of severely ill ME/CFS patients have been blamed for "encouraging" patients to remain sick by providing essential care, and told to stop essential care.[17] Some parents of severely ill children with ME/CFS found themselves accused of medical neglect or Munchausen's Syndrome by Proxy when they declined potentially harmful medical treatment, or the children were labelled as having school phobia rather than a genuine illness when doctors or social workers denied the reality of their illness.[18]

Forced treatment[edit | edit source]

The belief of some health professionals that ME/CFS is entirely or partly psychological/behavioral in nature has led to some patients, including children, being forcibly admitted to locked psychiatric units in order to force them to participate in treatment that they had previously declined. Concerns over forced treatment of severely ill ME patients has led to some charities to produce advise for patients and carers about how to avoid unnecessary and harmful forced psychiatric admission.[19] Patients known to have been subjected to inappropriate forced treatments in psychiatric units include Sophia Mirza, who died of M.E. just a few months after being released,[17][20] and Karina Hansen, who was later found to have been illegally detained.[21] ME/CFS is not classified as a psychological disorder, so patients typically have this diagnosis removed and are misdiagnosed with a psychiatric diagnosis that includes physical symptoms instead, e.g., bodily distress disorder, functional somatic syndrome, somitization or conversion disorder, or in the case of children, the unrecognised diagnosis of pervasive refusal syndrome.[19] The mental illness diagnosis can be used to claim patients are unable to make their own healthcare decisions or are not able to make decisions in their own best interests, which allows doctors to determine their treatment for them. Forced treatments may include exercise, cognitive behavioral therapy (if patients can still speak), or behavioral approaches like removing disability aids and leaving food out of reach to "motivate" patients to over-exert in order to eat.[19]

Call for apologies to patients[edit | edit source]

In 2015, several doctors publicly called for the medical community to apologize to ME/CFS patients for their decades of poor treatment, including José Montoya, who was then a specialist doctor and researcher at Stanford University, and Charles Shepherd, medical director of the ME Association, who is also a doctor with ME.

Dr Sarah Myhill has a long-standing petition calling on the UK government to carry out an inquiry into the medical abuse of M.E. patients.[22]

A number of researchers who promote the biopsychosocial model of ME/CFS have been described as gaslighting ME/CFS patients and intimidating ME/CFS advocates,[12][23][13][24] and research has shown that health professionals routinely suggest or provide inappropriate and harmful treatments,[10][8] wrongly suggest that a patient's ME/CFS symptoms result only from psychological factors or from a mental health condition such as depression, anxiety, or somatization, or treat patients as if their symptoms are in some way "all in their head"—regardless of the symptoms or history that the patient has.[8][25][26][27]

Chronic illnesses[edit | edit source]

Medical gaslighting behavior by health professionals is experienced by patients with certain chronic illnesses, particularly those that also disproportionately affect women, such as endometriosis,[3] chronic pain,[25] fibromyalgia, irritable bowel syndrome, and medically unexplained symptoms (sometimes called persistent physical symptoms).[23] People with long COVID are also reporting gaslighting by medics.[1][28]

Notable studies and publications[edit | edit source]

  • 2008, Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)—A case study[29] - (Abstract)
  • 2015, THIRTY YEARS OF DISDAIN: How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis][27] - (Full text)
  • 2016, Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent[10] - (Full text)
  • 2016, Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?[30] - (Full text)
  • 2017, Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome[31] - (Full text)
  • 2019, Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade[32] - (Abstract)
  • 2019, Dismissing chronic illness: A qualitative analysis of negative health care experiences[8] - (Full text)

Articles and blogs[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 Mitchell, Natasha (October 22, 2020). "Doctors warn of lasting effects of COVID-19 after struggling to recover from virus". ABC News | Health & Wellbeing. Retrieved October 24, 2020.
  2. Nelson, Hilde Lindemann (2001). "Narrative Repair: Reclaiming Moral Agency". Damaged Identities, Narrative Repair. Cornell University Press. pp. 29–30. ISBN 978-0-8014-8740-8.
  3. 3.0 3.1 Weiss, Suzannah (March 6, 2018). "How Doctors Gaslight Women into Doubting Their Own Pain". Vice. Retrieved October 24, 2020.
  4. Michael VanElzakker [@MBVanElzakker] (August 16, 2016). "What #PACEtrial called "CBT" is not normal CBT" (Tweet). Retrieved October 31, 2020 – via Twitter.
  5. DiGiulio, Sarah (July 13, 2018). "What is gaslighting?". NBC News. Retrieved May 6, 2022.
  6. 6.0 6.1 McKinnon, Rachel; Kidd, Ian James; Medina, José; Pohlhaus, Gaile (2017). "Gaslighting as epistemic injustice". The Routledge Handbook of Epistemic Injustice. Taylor & Francis. pp. 167–174. ISBN 978-1-351-81450-8.
  7. 7.0 7.1 Pickles, Camilla; Herring, Jonathan (2019). Childbirth, Vulnerability and Law: Exploring Issues of Violence and Control. Routledge. ISBN 978-0-429-81290-3.
  8. 8.0 8.1 8.2 8.3 8.4 McManimen, Stephanie; McClellan, Damani; Stoothoff, Jamie; Gleason, Kristen; Jason, Leonard A. (March 4, 2019). "Dismissing chronic illness: A qualitative analysis of negative health care experiences". Health Care for Women International. 40 (3): 241–258. doi:10.1080/07399332.2018.1521811. ISSN 0739-9332.
  9. 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.
  10. 10.0 10.1 10.2 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. doi:10.1177/1359105316667798.
  11. Agardy, Susanna (August 2017). "Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman". Journal of Health Psychology. 22 (9): 1206–1208. doi:10.1177/1359105317715476. ISSN 1359-1053.
  12. 12.0 12.1 12.2 Williams, Margaret (March 2017). "The Power of Propaganda?" (PDF). Retrieved October 31, 2020.
  13. 13.0 13.1 Tuller, David (November 8, 2018). "Trial By Error: An Australian Exchange with Professor Sharpe". Virology blog. Retrieved October 31, 2020.
  14. 14.0 14.1 Perkins, Vernita; Jason, Leonard A. (April 11, 2022). "Long COVID and Gaslighting". Psychology Today.
  15. Mariani, Mike (February 3, 2022). "The great gaslighting: how Covid longhaulers are still fighting for recognition". The Guardian.
  16. "Evidence submitted by Professor Malcolm Hooper (NICE 07)". March 2007. Retrieved October 31, 2020.
  17. 17.0 17.1 "The Story of Sophia and M.E." Invest in ME Research. Retrieved August 10, 2018.
  18. Colby, J (February 2007). "Special problems of children with myalgic encephalomyelitis/chronic fatigue syndrome and the enteroviral link". Journal of Clinical Pathology. 60 (2): 125–128. doi:10.1136/jcp.2006.042606. ISSN 0021-9746. PMC 1860612. PMID 16935964.
  19. 19.0 19.1 19.2 The Grace Charity for M.E.; 25% ME Group (January 2019). "Knowledge in the Hope of Protecting M.E. Sufferers from Unnecessary Sectioning". Retrieved July 12, 2019.
  20. "Neuropathological Report". Sophia and ME. Retrieved August 10, 2018.
  22. Myhill, Sarah. "Medical Abuse In ME Sufferers (MAIMES)". Dr Myhill. Retrieved October 31, 2020.
  23. 23.0 23.1 Tuller, David. "Trial By Error: Some Thoughts on Long-Covid, ME/CFS and MUS". Virology blog. Retrieved October 24, 2020.
  24. 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.
  25. 25.0 25.1 Benjamin J., Newton; Southall, Jane L.; Raphael, Jon H.; Ashford, Robert L.; LeMarchand, Karen (2013). "A Narrative Review of the Impact of Disbelief in Chronic Pain". Pain Manag Nurs. pp. 161–171.
  26. 26.0 26.1 Hooper, Malcolm (2003). "THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS? A consideration of the role of Professor Simon Wessely and other members of the "Wessely School" in the perception of Myalgic Encephalomyelitis (ME) in the UK.
    Background Briefing for the House of Commons Select Health Committee"
    (PDF). Retrieved October 15, 2018.
  27. 27.0 27.1 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.
  28. Prior, Ryan (October 12, 2020). "Kids struggle with Covid-19 and its months of aftermath". CNN. Retrieved October 24, 2020.
  29. 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.
  30. 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.
  31. 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.
  32. 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.
  33. Shepherd, Charles (December 7, 2015). "It's time for doctors to apologise to their ME patients". The Telegraph. Archived from the original on December 7, 2015. Retrieved October 31, 2020.