Medical neglect and abuse

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

Medical neglect and abuse of patients with myalgic encephalomyelitis/chronic fatigue syndrome by doctors and healthcare workers have been consistently reported by patients with ME/CFS, their families, ME patient groups, journalists, politicians, by some coroner inquests, and even by some doctors specializing in ME/CFS. These reports of medical abuse and dangerous neglect go back decades and span multiple countries.[1][2]

Patient experiences[edit | edit source]

Sophia Mirza experienced abusive treatment shortly before her death from vet severe M.E.[3] Sophia was living with her mother when her mother's home was broken into in order to forcibly remove Sophia under the Mental Health Act, forcing Sophia to undergo psychiatric treatment at a mental hospital. This was because doctors had decided Sophia's M.E. was a psychiatric illness rather than a physical disease.[4] Sophia's mother was able to get the psychiatric section removed but Sophia had deteriorated significantly in that time, and died of M.E. shortly after being released.[4] After Sophia's death, an autopsy by an independent neuropathologist found Sophia's spine contained massive infection.[5]

See also
Sophia Mirza.

Merryn Crofts, who died of M.E. aged just twenty, was "vindicated by death" after having doctors ignore and dismiss her symptoms for years.

In 2013, Karina Hansen, a young Danish woman with a well-established diagnosis of M.E., was physically removed from her parent's home by police and forced into harmful in-patient treatment, first at a neuro center then at a brain injury rehabilitation unit. This included physical and psychological abuse, and the misuse of a harmful psychosomatic approach to treat ME/CFS under the false belief that mental illness was causing her M.E. symptoms.[6][7] Karina was denied visitors, and had deteriorated significantly and lost all speech by the time her sister was able to see her.[7] Karina was separated from her parents and allowed no visitors or cards for long periods. Karina's parents fought a long legal battle to have the harmful treatment stopped, during this battle it was revealed that she had been held illegally against her will and had not been under a mental health order for much of the time.[7] She was released in 2016, as a result of the legal case, by this time Karina's abuse had drawn international attention, particularly when it emerged that Karina had been detained illegally. Karina remains severely traumatized.[8][9]

See also
Karina Hansen.

After falling ill at age 14 with very severe ME, Jessica Taylor-Bearman was hospitalized for four years, experiencing physical and psychological abuse, and sexual abuse at the hands of a hospital carer.[10][11] When she left hospital she had still not recovered from ME.[11]

In 2009, one comment on a public news article posted by a patient read:

"Sorry, but I was damn near killed by such idiocy so I have not the slightest sympathy for such bigoted physicians...I want several prominent persons responsible for this terrible abuse of millions of ill people across the globe criminally charged and tried for negligence...Many people have DIED because of this, either by direct abuse by doctors, or by disdainful refusal to aid, or actively preventing research into physical causes."[1]:207

Doctors describe abuse and neglect[edit | edit source]

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Dr. Nigel Speight on Paediatric ME/CFS (2014). Stockholm, Sweden.

In 2014, Dr Nigel Speight, a British pediatrician, gave an invited presentation, Very Severe - Why Are Patients neglected and Abused? about the medical abuse and neglect of ME/CFS patients at the annual conference of the UK charity Invest in ME Research.[12] In the same year, Dr Speight also gave a presentation on pediatric ME/CFS in Sweden, during which he described some of the cases of abuse by medical professionals that he was aware of.[13]

MAIMES petition[edit | edit source]

In 2017, Dr Sarah Myhill, a British doctor specializing in M.E. created the Medical Abuse In ME Sufferers (MAIMES) petition to call for an UK public inquiry into the abusive medical treatment suffered by patients with M.E., and to call for this to end.[14][15] By late 2021, the MAIMES petitions had been signed by over 20 UK Members of Parliament.[2]

Parents of children with ME/CFS[edit | edit source]

In 2013, during a meeting with a government official organized by Invest in ME Research, the parent of a child with severe ME spoke about their experiences:

"Severe ME causes panic in healthcare professionals who want quick fixes, and look around for some other causes in parents or patients (Munchausen's by Proxy, Pervasive Refusal Syndrome and so on) despite the [Chief Medical Officer] CMO report recognising ME as an organic illness...
Advice/information given by unhelpful GPs and consultants, paediatricians over the years included removal of parental support, physiotherapy, stating that ME is not a real disease, that it was an illness caused by exam nerves etc."[16]

Evidence[edit | edit source]

"The bastards don't want to get better" was how some nurses saw patients with severely ME during a clinical trial known as the FINE trial.[17] This phase was published in the peer-reviewed scientific publication of the FINE Trial, which consisted of aerobic exercise and psychological treatments which were ultimately found to be ineffective.[17] The clinical trial was intended to determine if the treatments worked, but medical professionals including some nurses delivering the treatment, had become convinced that the treatments must work, they ignored harms, and angrily blamed patients who deteriorated or did not recover.[1] Despite a number of patients significantly deteriorating, and at least one life-threatening medical emergency, patient harms were ignored both during and after the trial.[17][1]

Two patients with severe ME who took part in the FINE trial, a clinical trial including exercise and psychological treatment reported significant coercion harm during the trials, which medical professionals running the trials ignored and refused to document. Professor Malcolm Hooper published this account from one FINE trial patient:

At the start of the programme, Miss C defined her condition as being between 6 to 7 out of 10.

A nurse visited Miss C at home and she was given a series of aerobic exercises to complete daily. The exercises largely involved walking, step aerobics done outside and other aerobics to be completed indoors... After the first month, she started to decline. Her symptoms increased in severity as the intensity and amount of exercise was increased. She reported this to the FINE team but was encouraged to continue even though she reported feeling unwell and that she was declining. She experienced an exacerbation of her gastrointestinal symptoms, which she was instructed to ignore and to continue with increasing the exercise time and intensity.

After four months, Miss C’s health had deteriorated to the point where she could no longer continue to keep up with the programme. Her condition continued to decline. At this point she was very weak, her symptoms were severe and she had to spend three months in bed. This was reported to the FINE Trial team. Miss C reports that they were not interested in her deterioration. She was told that she had finished the trial and that she was considered a success and to be cured due to her initial improvement. This was distressing for Miss C as this was clearly not the case... there was no follow‐up care and all the counselling and support that was available during the trial was withdrawn... Since undertaking the graded exercise, Miss C now rates her condition to be 2 out of 10 and she continues to decline. She now has added disabilities that were exacerbated by the graded exercise regime.[1]:437-439

— Malcolm Hooper, Two FINE Trial Case Histories, Magical Medicine: How to Make a Disease Disappear

Notable studies[edit | edit source]

  • 2021, The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME)(I): A preliminary study[18] (Full text)

Reports[edit | edit source]

Talks and interviews[edit | edit source]

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Books[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 1.2 1.3 1.4 1.5 Hooper, Malcolm (February 12, 2020). "Magical Medicine: How to Make a Disease Disappear" (PDF). Contributions from members of the ME community. Researched by Margaret Williams.
  2. ↑ 2.0 2.1 Myhill, Sarah. "Medical Abuse of ME Sufferers (MAIMES)". Retrieved October 20, 2021.
  3. ↑ Mirza, Sophia. "Certified Copy of an Entry - Death Certificate". SophiaAndME.org.uk.
  4. ↑ 4.0 4.1 "The Story of Sophia and M.E." Invest in ME Research. Retrieved August 10, 2018.
  5. ↑ "Neuropathological Report". sophiaandme.org.uk. Retrieved August 10, 2018.
  6. ↑ "Karina Hansen". ME Global Chronicle. October 25, 2015. pp. 6–21.
  7. ↑ 7.0 7.1 7.2 Eliot-Smith, Valerie (April 4, 2016), "Karina Hansen 4: Timeline, Torture and Tragedy", Valerie Eliot-Smith Blog
  8. ↑ Chronicle, ME Global. "The ME Global Chronicle 20161020 - Karina Hansen / Newsletters / Downloads - The ME Global Chronicle". let-me.be. Retrieved October 23, 2018.
  9. ↑ Chronicle, ME Global. "ME Global Chronicle #019a - The ME Global Chronicle". let-me.be. Retrieved October 23, 2018.
  10. ↑ Thurm, Ali (July 31, 2018). "Review {{|}} A Girl Behind Dark Glasses by Jessica Taylor-Bearman". The London Magazine.
  11. ↑ 11.0 11.1 "A girl in one room: "I've lost trust in doctors over 14 years of not being believed or understood"". Hysterical Women. February 2021.
  12. ↑ Invest in ME Research (August 2014). "NEWSLETTER AUGUST 2014" (PDF).
  13. ↑ Speight, Nigel (2014). "Dr Nigel Speight on Paediatric ME/CFS". YouTube. Stockholm, Sweden.
  14. ↑ Pike (August 27, 2017). "MAIMES (Medical Abuse Of ME's) The Time Has Come To End The Abuse". Health Rising.
  15. ↑ Myhill, Sarah (October 19, 2017). "Stop The Abuse - Dr. Myhill On PACE Exposed". Life The Basic Manual.
  16. ↑ Invest in ME Research (March 2013). "Spring 2013 Newsletter".
  17. ↑ 17.0 17.1 17.2 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...
  18. ↑ https://doi.org/10.1080/07399332.2021.1925900

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.

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