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Medical neglect and abuse
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'''Medical neglect''' and '''abuse''' of patients with [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]] by doctors and healthcare workers have been consistently reported by patients with [[myalgic encephalomyelitis|ME]]/[[chronic fatigue syndrome|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.<ref name="magicalmedicine" /><ref name="MAIMESweb" /> ==Patient experiences== [[Sophia Mirza]] experienced abusive treatment shortly before her death from [[severe and very severe ME|vet severe M.E.]]<ref name=deathcertificate>{{Cite web|url=http://www.sophiaandme.org.uk/legal/l1.jpg | title = Certified Copy of an Entry - Death Certificate | last = Mirza | first = Sophia | date = |website=SophiaAndME.org.uk|archive-url=|archive-date=|url-status=|access-date=}}</ref> 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 [[Psychologization|psychiatric illness rather than a physical disease]].<ref name="sophiasstory" /> 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.<ref name="sophiasstory">{{Cite web|url=http://www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm | title = The Story of Sophia and M.E. | last = | first = | date = |website=[[Invest in ME Research]]|archive-url=|archive-date=|url-status=|access-date=2018-08-10}}</ref> After Sophia's death, an autopsy by an independent neuropathologist found Sophia's spine contained massive infection.<ref>{{Cite web|url=http://www.sophiaandme.org.uk/neuropathologicalreport.html | title = Neuropathological Report | last = | first = | date = | website = sophiaandme.org.uk |archive-url=|archive-date=|url-status=|access-date=2018-08-10}}</ref> {{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 [[medically unexplained physical symptoms|psychosomatic]] approach to treat ME/CFS under the [[illness beliefs|false belief]] that [[mental illness]] was causing her M.E. symptoms.<ref name="MEGlobChron20151025KH">{{cite web | title = Karina Hansen | journal = ME Global Chronicle | pages = 6-21 | date = Oct 25, 2015 | url = http://let-me.be/download.php?view.24 }}</ref><ref name="EliotSmith20160404" /> Karina was denied visitors, and had deteriorated significantly and lost all speech by the time her sister was able to see her.<ref name="EliotSmith20160404" /> 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.<ref name="EliotSmith20160404">{{citation | last = Eliot-Smith | first1 = Valerie | authorlink1 = Valerie Eliot-Smith | title = Karina Hansen 4: Timeline, Torture and Tragedy| website = Valerie Eliot-Smith Blog | date = Apr 4, 2016 | url = https://valerieeliotsmith.com/2016/04/04/karina-hansen-4-timeline-torture-tragedy/}}</ref> 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.<ref>{{Cite web|url=http://let-me.be/download.php?view.36 | title = The ME Global Chronicle 20161020 - Karina Hansen / Newsletters / Downloads - The ME Global Chronicle | last = Chronicle | first = ME Global|website=let-me.be|language=en|access-date=2018-10-23}}</ref><ref>{{Cite web|url=http://let-me.be/news.php?item.22.1 | title = ME Global Chronicle #019a - The ME Global Chronicle | last = Chronicle | first = ME Global|website=let-me.be|language=en|access-date=2018-10-23}}</ref> {{See also|Karina Hansen}} After falling ill at age 14 with [[severe_and_very_severe_ME#verysevere|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.<ref name="lonxonreview">{{Cite web|url=https://www.thelondonmagazine.org/review-a-girl-behind-dark-glasses/ | title = Review {{|}} A Girl Behind Dark Glasses by Jessica Taylor-Bearman | date = Jul 31, 2018 | website = The London Magazine | last = Thurm|first = Ali}}</ref><ref name="hysterical">{{Cite web|url=https://hystericalwomen.co.uk/2021/02/02/a-girl-in-one-room-lost-trust-doctors-over-years-not-believed-understood/ | title = A girl in one room: "I've lost trust in doctors over 14 years of not being believed or understood" | date = Feb 2021 | website = Hysterical Women}}</ref> When she left hospital she had still not recovered from ME.<ref name="hysterical" /> In 2009, one comment on a public news article posted by a patient read:<br /> :"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."<ref name="magicalmedicine" />{{Rp|207}} ==Doctors describe abuse and neglect== {{Video|id=https://www.youtube.com/watch?v=kl5EfvzsL88|service=youtube|dimensions=550|description=Dr. Nigel Speight on Paediatric ME/CFS (2014). Stockholm, Sweden.|alignment=right|urlargs=start=20&rel=0&autoplay=0}} 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]].<ref name="Speightpres">{{Cite web|url = http://www.investinme.org/Documents/Newsletters/Invest%20in%20ME%20August%20Newsletter%202014.pdf | last=Invest in ME Research | authorlink = Invest in ME Research | title = NEWSLETTER AUGUST 2014 | date = Aug 2014}}</ref> 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.<ref name="SpeightSweden">{{Cite web|url=https://www.youtube.com/watch?v=kl5EfvzsL88|first = Nigel | last = Speight | authorlink = Nigel Speight | title = Dr Nigel Speight on Paediatric ME/CFS| date = 2014 |location=Stockholm, Sweden|website=YouTube}}</ref> ===MAIMES petition=== 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.<ref name="MAIMESpost">{{Cite web|url=https://www.healthrising.org/forums/threads/maimes-medical-abuse-of-mes-the-time-has-come-to-end-the-abuse.5543/ | title = MAIMES (Medical Abuse Of ME’s) The Time Has Come To End The Abuse|publisher=Health Rising | date = Aug 27, 2017 | author-link = | last = Pike | first = }}</ref><ref name="MAIMESvideo">{{Cite web|url=https://www.youtube.com/watch?v=LasPOnRx1Ek | title = Stop The Abuse - Dr. Myhill On PACE Exposed|publisher=Life The Basic Manual | date = Oct 19, 2017 | author-link = Sarah Myhill | last = Myhill | first = Sarah}}</ref> By late 2021, the MAIMES petitions had been signed by over 20 UK Members of Parliament.<ref name="MAIMESweb">{{Cite web|url=http://drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers_(MAIMES) | title = Medical Abuse of ME Sufferers (MAIMES)|access-date=Oct 20, 2021 | author-link = Sarah Myhill | last = Myhill | first = Sarah}}</ref> ==Parents of children with ME/CFS== In 2013, during a meeting with a government official organized by Invest in ME Research, the parent of a child with [[severe and very severe ME |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 ([[Fabricated Induced Illness|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 [[stress|exam nerves]] etc."<ref name="parentpres">{{Cite web|url=http://www.investinme.org/IIME-Newslet-1303-04.shtml | date = March 2013 | title = Spring 2013 Newsletter | last = Invest in ME Research | authorlink = Invest in ME Research}}</ref> ==Evidence == "The bastards don't want to get better" was how some nurses saw patients with [[Severe and very severe ME|severely ME]] during a clinical trial known as the [[FINE trial]].<ref name="Peters2011">{{Cite journal | last = Peters | first = Sarah | authorlink = | last2 = Wearden | first2 = Alison | authorlink2 = Alison Wearden | last3 = Morriss | first3 = Richard | authorlink3 = | last4 = Dowrick | first4 = Christopher F | authorlink4 = | last5 = Lovell | first5 = Karina | authorlink5 = | last6 = Brooks | first6 = Joanna | authorlink6 = | last7 = Cahill | first7 = Greg | authorlink7 = | last8 = Chew-Graham | first8 = Carolyn | authorlink8 = Carolyn Chew-Graham | date = Dec 2011 | title = 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|url=http://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132|journal=Implementation Science|language=en|volume=6|issue=1|pages=|doi=10.1186/1748-5908-6-132|issn=1748-5908|pmc=3259041|pmid=22192566|quote=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...|via=}}</ref> This phase was published in the peer-reviewed scientific publication of the FINE Trial, which consisted of aerobic [[exercise]] and [[Biopsychosocial model|psychological]] treatments which were ultimately found to be ineffective.<ref name="Peters2011" /> 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.<ref name=magicalmedicine /> 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.<ref name="Peters2011" /><ref name=magicalmedicine /> Two patients with [[severe and very severe ME|severe ME]] who took part in the [[FINE trial]], a clinical trial including [[exercise]] and [[Biopsychosocial model|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: {{Quote frame|quote=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.<ref name=magicalmedicine />{{Rp|437-439}}|source=Two FINE Trial Case Histories, Magical Medicine: How to Make a Disease Disappear | author = Malcolm Hooper | date = 2010<ref name=magicalmedicine />}} ==Notable studies == *2021, The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME)(I): A preliminary study<ref name="Gimeno2021pilot">https://doi.org/10.1080/07399332.2021.1925900</ref> [https://www.xaviergimeno.net/files/CFS_symbolic_violence_1en.pdf (Full text)] ==Reports == *2010, [http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf Magical Medicine: How to Make a Disease Disappear]<ref name=magicalmedicine>{{Cite web|url= http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf | title =Magical Medicine: How to Make a Disease Disappear | date = Feb 12, 2020 | last = Hooper | first = Malcolm | authorlink = Malcolm Hooper|others=Contributions from members of the ME community. Researched by [[Margaret Williams]]}}</ref> [http://www.margaretwilliams.me/2010/magical-medicine-press-release_12feb2010.pdf Press release] ==Talks and interviews== {{Video|id=https://www.youtube.com/watch?v=LasPOnRx1Ek | date = Oct 19, 2017|service=youtube|caption=Stop The Abuse - Dr. Myhill On PACE Exposed}} <br style="clear:both"> ==Books== *[[The Mental Health Movement: Persecution of Patients?]] - by Prof. Malcolm Hooper *[[Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand]] - Julie Rehmeyer *[[A Girl Behind Dark Glasses]] - Jessica Taylor-Bearman ==See also== *[[Medical Abuse In ME Sufferers (MAIMES)]] *[[Medical gaslighting]] *[[Biopsychosocial model]] *[[The Mental Health Movement: Persecution of Patients?]] *[[Thirty Years of Disdain]] *[[The Tragic Neglect of Chronic Fatigue Syndrome - The Atlantic: Health (2015)]] *[[Medically unexplained physical symptoms]] *[[Post-traumatic stress disorder]] ==Learn more== *2017, [https://www.youtube.com/watch?v=LasPOnRx1Ek Stop The Abuse - Dr. Myhill On PACE Exposed] - YouTube *2014, [https://www.youtube.com/watch?v=kl5EfvzsL88 Dr. Nigel Speight: 'Paediatric ME/CFS'] including cases of abuse by medical professionals and others *2013, [http://dxrevisionwatch.com/2013/05/11/something-rotten-in-the-state-of-denmark-karina-hansens-story/ Something rotten in the state of Denmark: Karina Hansen's story] - DX Revision Watch *[https://valerieeliotsmith.com/2018/06/25/karina-hansen-8-the-aftermath-continues/amp/ Karina Hansen 8: The Aftermath Continues] - Valerie Eliot-Smith ==References== {{reflist}} [[Category:Abuse]] [[Category:Ethics]] [[Category:Psychological paradigm]]
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