Medical neglect and abuse

Patient experiences of medical neglect and abuse linked to myalgic encephalomyelitis/chronic fatigue syndrome have been reported by a number of patients with ME, ME/CFS patient groups, and by some doctors specializing in ME/CFS. These reports of medical abuse and dangerous neglect go back decades.

Patient experiences
Sophia Mirza experienced abusive treatment shortly before her death from severe M.E. 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. 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. After Sophia's death, an autopsy by an independent neuropathologist found Sophia's spine contained massive infection.

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. Karina was denied visitors, and had deteriorated significantly and lost all speech by the time her sister was able to see her. 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. She was released in 2016, as a result of the legal case, by this time Karina's abuse had drawn international attention. Karina remains severely traumatized.

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. When she left hospital she had still not recovered from ME.

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."

Doctors describe abuse and neglect
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. 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.

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. By late 2021, the MAIMES petitions had been signed by over 20 UK Members of Parliament.

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 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."

Evidence
"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. 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. 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. 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.

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:

Notable studies

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

Reports

 * 2010, Magical Medicine: How to Make a Disease Disappear Press release

Talks and interviews


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

Learn more

 * 2017, Stop The Abuse - Dr. Myhill On PACE Exposed - YouTube
 * 2014, Dr. Nigel Speight: 'Paediatric ME/CFS' including cases of abuse by medical professionals and others
 * 2013, Something rotten in the state of Denmark: Karina Hansen’s story - DX Revision Watch
 * Karina Hansen 8: The Aftermath Continues - Valerie Eliot-Smith