Hospital Mistreatment of Severe ME Patients Globally

This #SevereMEday, 8th August 2024, the World ME Alliance is highlighting the experiences of people with Severe ME in hospitals across the globe. People with ME everywhere experience stigma, denial of evidence-based science, disdain and dismissal of symptoms by healthcare providers. Yet for those with Severe ME requiring hospital care, the consequences may be  fatal.

The grave dangers people with Severe ME are exposed to in hospital were underlined at the recent coroner’s inquest in the UK for Maeve Boothby O’Neill. Maeve, a 27 year old woman with Severe ME and resultant malnourishment, died in Oct 2021 following 3 hospital admissions where denial of emergency nutritional care led to her terminal decline.

Sadly, the mistreatment endured by Maeve Boothby O’Neill is far from rare. Carla Noaum, aged 23, diagnosed with ME over 8 years ago, has been battling to get appropriate care at West Middlesex Hospital in the UK since her admission in March 2024. Carla’s weight has dropped from 52kg to 35kg and she is suffering extreme digestive pain  from a nasogastric feeding tube, yet a psychiatrist stopped her pain medication and insisted on exposing her to light. The BBC reported her father as saying she was “screaming from pain” and repeatedly losing consciousness over nine days as a result.

France

This pattern of neglect and harm is being repeated around the world. Severe ME patient Alicia Pallenchier from France recalls:  “The last time I went to the hospital, I was deteriorating fast. They refused to admit me to the hospital where I live because they said I should just lose weight and see a psychiatrist. So I had to go 150 km away from home.

“At the beginning, I called them several times to take me to the bathroom, put on my pyjamas, or do things I could no longer do by myself. They opened the shutters and windows, even though I couldn’t stand the light. I was told that I shouldn’t do less in the hospital than I did at home. I told them that at home, I was dependent on my mother for almost everything.

“They offered me a shower every day because they didn’t understand that I wasn’t capable of having more than one shower a week. I had to ask for a nurse to bathe me but she didn’t understand as I am young.

“Almost no one came to help me. They never brought me the commode, even though I asked repeatedly. I had to get up several times a day to go pee, and I fell a few times. The meat was too hard to eat, but they didn’t offer to cut it. They even criticised me for my choice of breakfast because I can’t digest coffee or tea.

“They managed to lose my pill organiser on the first day. Missing the pill to stop menstruation was enough to trigger my period at the end of the week. They only offered me diapers. I left the hospital in an even more exhausted and compromised state than before.”

Greece

An anonymous patient in Greece reports: “Despite my Severe ME symptoms, hospital staff dismissed my condition as psychosomatic. They forced me through harmful tests and physical activities even when I couldn’t speak due to severe PEM.

“The staff mocked me and failed to provide appropriate care. I couldn’t eat their food because of severe MCAS so I was having to choose between constant reactions or not eating, and they exposed me to intense odours despite my extreme sensitivity. They refused to read relevant scientific literature on ME and their insistence that I was “overreacting” and that “it’s all in my head” contributed to an increase in abuse from my family.

“The Greek health system caused my condition to worsen, leaving me in a state of living death.”

Pakistan

Another anonymous patient summarised her experience of hospital in Pakistan: “No protection was offered against lights or sound. No pillows were given. Disability accommodations were forcefully taken away. I wasn’t allowed to use my collar (to support vertebrae compromised by EDS and CCI) or HR-monitoring watch. My IV fluids and pulse oximeter were removed. They told me to stop coming to the ER or I’ll be sent to the psych ward. They also made fun of me for trying to involve international ME doctors. I wouldn’t go to the ER again unless I was shot or in a car accident.”

Norway

Rachel Caroline from Norway states: “I am refused help. They say as long as I am not fatally sick, they won’t admit me to the hospital. It doesn’t matter if I am screaming in pain or unable to eat. Norway does not believe in energy-limiting conditions. Doctors say it’s just in my head, and I need to think myself healthy. I have no mental illness but still they just sent me home.

“I’m getting sicker every week. I scream with pain for 2 hours every day. I have stopped eating now. My poop is white. My urine is brown. There is often blood in my poop. And 40 other symptoms.”

“I’m not dying because of ME or Long Covid, I’m dying because the doctors are killing me by not investigating or helping me.”

Safe hospital care for Severe ME

Beyond medical neglect and gaslighting, hospital mistreatment that harms people with Severe ME to a life-threatening degree can amount to inhuman and degrading treatment.

The World ME Alliance hopes that the findings of Maeve Boothby O’Neill’s inquest will catalyse change for Severe ME patients globally.

Hospital care for Severe ME will always be challenging, but there are simple steps that can be taken to safeguard vulnerable patients and improve their experiences.

Learn about what safe hospital care should look like for people with Severe ME.

WAMES works with the World ME Alliance as they seek to:

• create global change by engaging the World Health Organisation’s support in designing and delivering services for ME
• enable ME organisations around the world to learn from, and support each other