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 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.
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.
ME – also knows as chronic fatigue syndrome – is defined as a serious, multi-system disease that impacts a person’s physical ability and quality of life. In severe cases, it can be fatal. There is no specific test available to diagnose the condition. Instead, a diagnosis is given based on symptoms and ruling out other causes, which can take years. There is no cure for the condition, but treatments can help ease and manage symptoms.
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.
According to Mayo Clinic, repeated exposure to sensory stressors such as light and touch can push people with ME into a state of sheer exhaustion called post exertion malaise (PEM) – often referred to as a “crash” – that can shut the body’s functions down completely. The clinic says: “It may take a person with ME/CFS days, weeks, or even months to return to their previous baseline after PEM.”
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. Tearful Lucy said: “Millie is saying ‘I just want my mummy, only my mummy will do’. She just wants my head on her chest the whole time I’m there. She just wants to feel mummy’s love. She says she wants to be team mummy and Millie again. People with severe ME need their mum or their advocate, whoever it is. She doesn’t want to let go of our hands when we have to leave. It’s unbearable.”
The mum describes the situation as “traumatising” and says her daughter begs every day to go home. Lucy said: “I’m despairing because she’s in hell, she wants to go home and she has verbalised this to doctors. But they’re not seeking help from ME specialists we recommended who understand Millie’s illness.”
Millie’s family allege she has been subjected to a string of “unnecessary” tests that they believe are causing her to deteriorate further. Lucy told how she was “traumatised” by one consultant’s apparent decision to “prise” Millie’s eyelids to test her reflexes as she begged him to stop. She also claims that one nurse tried to remove Millie’s eye mask without consent. The General Medical Council’s guidelines on decision making and consent state that examinations should be stopped ‘immediately’ if there is ‘any sign that they may be confused or unhappy about what you are doing.’
They 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.
Millie’s sister Abbie McAinsh, 22, who has been by her side every day, said: “It’s totally heartbreaking, Millie is my best friend and I love her so much. I’m scared that Millie will be broken beyond repair, forever. She feels like nobody is listening to her and that nobody is taking us seriously. She’s so unwell. Her ME is still deteriorating, she’s just going to get worse and worse.”
Millie first started suffering symptoms in 2019 and her health has worsened every year since. Her condition deteriorated quickly in December 2023 when her family feared she could die of starvation unless a feeding tube was fitted.
She was admitted to Lancaster Royal Infirmary on 30th January 2024 at the recommendation of her GP and two private ME specialists. She hoped to stay a mere matter of days but is still there nine weeks on amid the wrangling over her diagnosis.
Lucy and Abbie feel they are being “punished” by hospital staff for trying to advocate for Millie. Lucy added: “Talking to doctors causes Millie agony but she has to do it to be heard.”
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 the 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.”
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.
The court heard how Merryn’s family wanted her to return home and attempt to control her environment as she was suffering extreme sensitivity to light, sound and touch, in addition to other symptoms, including post-exertional malaise.
Merryn’s mother, Clare Norton, said at the inquest: “If you put someone with a migraine in a room with bright lights, that is what it was like for Merryn with noise and movement. Her energy was pushed beyond what she could tolerate. She thought she could beat it but she learned the hard way she couldn’t.”
In February 2016, Merryn was referred to community care. Clare said: “Merryn never recovered. I was so scared she was going to die and that’s when we were told she was terminal. She knew she didn’t want to go back to hospital. Although her experience at Salford [hospital] was better than others, she felt like she was being tortured and she knew she always came out worse. She didn’t want to die in hospital.”
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.
“She went to hospital because I could not get enough calories into her. So I was counting the calories that she was taking and she was trying, she was really hungry, this is what really peeves me off about the NHS, is that they see a young woman who can’t eat and they assume it’s an eating disorder, even though the person is telling them how hungry she is. ‘I’m really hungry and I really want to eat.’ There is nothing in there that is mentally disordered about food. Absolutely nothing, and yet they still would not treat her.”
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.”
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. Jason Brady of Blackwater Law, explained: “The NICE provides guidance of care to the NHS based on their own research and evaluations of health technologies, as well as the clinical effectiveness and value for money of different treatment options. They work to encourage the NHS to implement the recommendations that they believe will lead to the best patient outcomes.
“It is crucial however to understand that it is not a legal requirement for NHS trusts to follow or implement the guidance of the NICE. The guidelines produced by NICE do not, once published, override the individual responsibility and judgement of the health care professional. They are however expected to take them fully into account when they are deciding on a treatment plan for a patient.”
Denise Spreag from charity MEAction Network said: “Millie’s treatment is extremely worrying and is making Millie’s very severe ME much worse. Unfortunately, this pattern of ignoring the updated NICE guideline on ME and treating this disease using the outdated, discredited and dangerous idea that it is a mental illness/eating disorder has already caused great harm to people suffering the most severe form of this devastating illness.
“We urge those involved in treating Millie to follow the NICE guideline, published after rigorous analysis of the science. They must listen to the ME experts, stop inappropriate treatment and treat people with ME and their families with humanity.”
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.”
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
