ME Association comment
“Dr William Weir and I have been assisting Ellie Fry at The Mirror explaining the situation that people with severe and very severe ME/CFS can face when admitted to hospital. Ellie has now published this excellent feature which we hope will raise much-needed awareness about these key concerns.”
Dr Charles Shepherd, Trustee and Hon. Medical Adviser to the ME Association
**Trigger Warning – Contains upsetting content**
‘I can't walk, talk or eat – doctors don't believe what's wrong with me and I think I'm going to die'
Millie McAinsh says she's ‘constantly hurting' and claims doctors ‘won't listen' to her wishes. The distressed teen is believed to be suffering with ME, a debhilitating illness that is often misunderstood. Millie has been diagnosed privately with severe myalgic encephalomyelitis (ME), and was admitted to hospital in January to get a feeding tube fitted after her condition deteriorated and she stopped being able to swallow food or liquids.
Feature article by Ellie Fry, Deputy online features editor, 04 April 2024
Extracts
A hospitalised teen who is unable to walk, talk or eat fears she is going to die because doctors don't agree that she has ME. Millie McAinsh, 18, says she suffers from ME that is so acute that she can't walk or sit up and struggles to speak or swallow. Even the smallest sensations like touch, noise and light unbearable, as her sensory hypersensitivity leaves her in agony.
“I feel like I'm dying. I'm constantly hurting. I'm in agony and they are not listening to me,” she said of her ordeal, which she describes as ‘torture'. “I can't take it anymore. I need to go home.”
Millie's family claim she “begged” doctors to help her eat on arrival and told them she was hungry, but at that point an official diagnosis was yet to be made and medics initially suspected she had a eating disorder. Millie and her family, though, have long been certain that she has ME – although getting a definitive diagnosis can be infamously difficult.
The problem, according to Millie's family, is that the treatment and investigations that are being offered by the hospital in their efforts to work out what's wrong are actually harming the teen. Desperate for a second opinion, they asked a private doctor to visit Millie in hospital who diagnosed severe ME. Professionals at the hospital no longer believe Millie has an eating disorder, but have not made a positive diagnosis of any condition so far.
Millie's distraught family worry that the stimulating hospital environment could overwhelm her system and kill her. Heartbroken mum Lucy Montgomery, 53, said: “Doctors keep saying they know Millie ‘believes' she feels this way. But they don't understand that even the footfall on the floor, the vibrations of someone walking nearby in the hospital, leave her in agony.”
Since voicing their concerns about Millie's care, the family's visiting hours at the hospital have been restricted, causing Millie further distress… The family also claim that doctors say she needs to be sat upright for tube feeding – a position they say is extremely painful for Millie and makes her feel like she is being “tortured”. While the hospital is following NHS protocol on tube feeding, ME experts argue that the guidelines are based on the needs of stroke patients and are not relevant to those with severe ME.
Dr William Weir, the private doctor who diagnosed Millie with severe ME, says she experiences this on a severe scale, where an excessively reduced volume of blood returns to the heart after getting up from a lying down position. Alice Barratt, another young woman with severe ME, faced the same plight at Exeter hospital where doctors would only tube feed her at a 30 degree angle. A petition from the family resulted in Exeter changing its guidance, allowing her to be tube fed lying down, which her family believe ultimately saving Alice from starvation…
The NICE Guideline on ME/CFS
Charities including the ME Association have long called for better nationwide training for doctors on the condition. Historically, it was considered by some to be a psychosocial illness and as such, The National Institute for Health and Care Excellence (NICE) recommended graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as treatments. But studies found that GET can actually do more harm than good, pushing patients beyond their limits and causing them to crash. One Swiss study said that ‘being told the disease was only psychosomatic' was the biggest contributor towards suicidal thoughts amongst patients.
After years of backlash and reports of patients being ‘forced' into the treatment regimes and even sectioned for resisting, NICE back-tracked in 2021 and withdrew the advice surrounding GET and CBT. It now classes ME as physiological, and the NHS agrees. However, hospitals are not forced to adopt NICE guidelines and patients and charities believe that the idea of the condition all ‘being in someone's head' still pervades.
Under the old guidelines, there were reports of parents being referred to social services for apparently encouraging their children to believe they were ill. Now, NICE has specific guidance for doctors, stating they should, “recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/ CFS: Disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf. Parents or carers acting as advocates and communicating on their behalf.” The guidelines also urge medical staff to “recognise that symptoms of severe or very severe ME/CFS may mean that people cannot communicate without support and may need to choose someone to be their advocate and communicate for them.”
Stolen lives
ME has stolen the lives of other patients across the country, many of whom experienced medical neglect before their untimely deaths. Merryn Crofts died of severe ME just days after her 21st birthday in 2017. Like Millie, Merryn begged for a feeding tube as she couldn't swallow or keep food down. One doctor told her “you have one, it's right there” while pointing to his mouth. A coroner ruled that ME triggered gastrointestinal failure in Merryn, who effectively starved to death. The landmark inquest concluded that her cause of death was starvation caused by a withdrawal of supportive nutrition, caused by ME…
Maeve Boothby O'Neil died aged 27 while battling severe ME. She was admitted to hospital three times, and each time she was discharged to her parents' care despite her rapid decline. Maeve's mum Sarah Boothby alleged at a pre-inquest hearing that her daughter's original consultant said there was ‘nothing wrong' with her and told her Maeve was ‘basically making it up'. An inquest into Maeve's death is due to take place in July. Sarah previously said: “[Maeve] became unable to chew. She was only able to have liquidised food, which had to be watered down so she could swallow it, and she wasn’t able to take in enough calories to maintain life…
Experts say the pattern of mis-diagnosis is common with severe ME patients, who often get wrongly diagnosed with an eating disorder. In a study reviewing ME in children, published by the Journal of Clinical Pathology, expert Jane Colby notes: “Myalgic encephalomyelitis has not uncommonly been mistaken for school phobia, anorexia nervosa, neglect, child abuse, Munchausen syndrome by proxy (fabricated or induced illness) or pervasive refusal syndrome. The common factor is often the perception of the illness as not capable of causing profound physical disability over a prolonged period.”
Lack of medical education
Dr Charles Shepherd, an ME expert who was a member of the committee that prepared the new NICE guideline on ME/CFS, added:
“Despite all the information on the management of severe and very severe ME in the new NICE guideline, many doctors are still not aware that people with severe ME often have difficulties with eating and swallowing. In addition they may have nausea and other gastrointestinal symptoms which makes eating and food digestion very difficult. As a result, they require expert nutritional management and may even require tube feeding.
“Sadly, difficulties with eating and swallowing, and consequent loss of weight, are still being misdiagnosed as a psychological eating disorder in some people with severe ME. People with severe ME are then being given totally inappropriate psychological treatment rather than the expert nutritional management they require. Misdiagnosis as a psychological eating disorder is both inappropriate and dangerous and contrary to what the NICE guideline is recommending.”
Treatment plans for ME vary across the country as each NHS trust controls its own framework, but the NICE guideline should be ‘taken into account,' according to guidance…
Official responses
A Department of Health and Social Care spokesperson said:
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be incredibly disabling, especially for those who have severe symptoms which is why we are improving the care and support available.
“People with ME/CFS can be supported to manage their symptoms and maximise their quality of life, with guidance for clinicians available from in the National Institute for Care Excellence.
“We have been consulting on a cross-government ME/CFS delivery plan for England, which will include an expansion of research, improvements to services, better education of professionals, and a plan for improving attitudes to the condition within the health system.”
Miss Jane McNicholas, Chief Medical Officer at University Hospitals of Morecambe Bay NHS Foundation Trust, said:
“Due to the complexities of the case, it would be inappropriate for us to comment except to say that our teams are working hard with relevant specialists to provide the best possible care.”