‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions

In January 2021, Maeve Boothby O’Neill took stock and summed up her position. “I’ve been tired since I was 13,” she wrote. “When I was 18, I was diagnosed with ME/CFS. I hoped I would finally get treatment and recover my health. I had every potential to be an asset to humanity and hoped and intended to advance the cause of human flourishing.”

Maeve, a bright, diligent, determined young woman, and her loved ones did their best over the years to get help but the treatment – and the fundamental understanding of myalgic encephalomyelitis/chronic fatigue syndrome – just was not available.

She wrote: “I cannot adequately describe how frightening it is to discover there are no doctors who can help you, they do not even know what is wrong with you. I am fighting for a chance to live.”

By March 2021, her ME was so severe that she was unable to sit up, hold a cup to her lips or chew. She was admitted to hospital, desperate to find a way of taking on food and drink. Despite the pain she was in, she clearly still wanted to live but, in the end, was hardly able to move, communicate or tolerate light, sound or touch – not even a loving hug. She died at home in a garden flat in Exeter on 3 October 2021, at the age of 27.

On Friday, Deborah Archer, the assistant coroner for Exeter, Plymouth, South Devon and Torbay, concluded that Maeve had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.

During the harrowing two-week inquest, her parents, Sarah Boothby and Sean O’Neill, described their increasingly desperate efforts to find help for her from doctors and their desire to try to improve treatment for people in her position, keenly watched by ME campaigners and patients with the illness.

Maeve Boothby O’Neill had dreamed of travelling after school

The hope is that her story will come to be seen as a landmark case that will lead to change in the way people with ME are treated and perceived.

Everyone agrees Maeve was an exceptional person. She was a vivacious child, a brilliant student and linguist with a deep interest in world affairs who dreamed of travelling after school.

As a young girl, she was robust and energetic. It is not clear what caused her ME but her tiredness began after she and her mother caught a mild virus when Maeve was 12.

Her father, in his statement to the inquest, said: “I remember picking her up one day from South Dartmoor college in a state of some distress; she had become dizzy and fainted while cross-country running.”

It was hard to find what was wrong. A paediatrician told Maeve her symptoms were “all in her mind”. She once asked her mother: “Do you think I’m making it up?”

Despite her persistent tiredness, she did well at school and had offers for Russell Group universities. In 2011 she was finally diagnosed at a Bristol hospital as having ME. She was unable to take up a place at university and over the next 10 years steadily declined.

She was determined to be a good patient and found out everything she could about ME. But, her father said: “Medicine and medics did not know what to do. Maeve encountered treatments that made her worse, such as exercise programmes, delayed diagnoses, ignorance, apathy and stigma.

“The medical orthodoxy is that ME is a behavioural problem or a psychological illness and that belief is deeply rooted in the NHS despite growing scientific evidence that it is a physical illness.”

During the inquest, Dr David Strain, an honorary consultant at the Royal Devon and Exeter foundation trust, who was involved in Maeve’s treatment, said the disease had been stigmatised because it did not have a diagnostic test.

He said: “Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease. That’s a travesty.”

Strain also said there was nowhere to treat people with ME. “I don’t think there is a ward anywhere in the country that is appropriate to manage ME patients,” he said.

Maeve became increasingly housebound, isolated and unable to take care of herself. Her mother had to give up her career to help her.

Maeve had begun writing a series of novels set on Dartmoor, where she had grown up

Yet Maeve was still ambitious. She began writing a series of novels set on Dartmoor, where she had grown up. She seemed to draw on her experiences to describe the loneliness of one of her characters, a bereaved woman: “The great grief she carried for the irretrievable loss of others but also of her former self was a wound that could not heal.”

By March 2021, it was becoming very difficult for her to eat or drink and she told her mother: “I need someone to know how unwell I am.” She was taken to the Royal Devon and Exeter hospital (RDH) but discharged the same day.

Her father was in hospital at the same time, being treated for cancer. He said: “It seems a harsh thing to say but she would have been better off in the hands of the NHS if she had had cancer.

“She and I were both in hospital around the same time. I was having state-of-the-art keyhole surgery. My treatment was swift, skilful and effective. Maeve presented as acutely ill – immobile, weak, in pain and unable to digest food and in danger of malnutrition – only to be told there was nothing that could be done for her. Within hours of her admission, she was bundled back into an ambulance and sent home.

“In my view, it was deeply discriminatory. Had Maeve presented with those symptoms but with a diagnosis other than ME, I believe she would have been treated very differently.”

In June 2021 Maeve wrote to her GP, Dr Lucy Shenton: “I really need help with feeding. I am hungry. I want to eat. I have been unable to sit up or chew since March. Please help me get enough food to live.”

Shenton, who worked hard for Maeve, was not well enough to give evidence to the inquest in person because she had suffered post-traumatic stress disorder over the case. But in a statement read out in court, Shenton summed up the issues neatly: “There needs to be more funding and research into ME to provide the evidence and guidelines for clinicians to work from.

“There needs to be somewhere in the NHS that provides specialist care for patients with severe ME and an easy mechanism to access that provision. There needs to be a way for the patient’s voice to be heard in meetings. Clear systems with appropriate safety nets ought to be in place.”

Maeve was admitted to hospital twice but attempts to help her to eat and drink failed. “Maeve was starving to death,” her mother said. It wasn’t that she did not want to eat. “She had a good appetite. She was hungry all the time, enviously asking me what I would be eating, and making menu suggestions for meals she would have eaten if she could.”

Maeve made it clear she wanted to be discharged from hospital. Her mother said: “If she had to die from starvation with severe ME, she wanted it to be in the familiarity of home and the care of those she loved.”

O’Neill told the inquest it had been difficult to get his daughter the palliative care she needed as she became critically ill because there was still suspicion that her illness was invented. Boothby said she died “in the company of those she loved”.

Maeve Boothby O’Neill ‘encountered treatments that made her worse’, said her father

Sonya Chowdhury, the chief executive of Action for ME, said she hoped Maeve’s case would prompt change. She said: “It is clear that the NHS has not yet developed the framework to deliver effective support to people with severe and very severe ME.

“There is no clear pathway for care and this is compounded by a lack of understanding that some healthcare professionals have and, as we have seen in situations like Maeve’s, stigma. There is no excuse for this.

“The scientific understanding for ME is lacking as a result of major underinvestment in research over the years but that is no excuse for what we have heard in Maeve’s situation.

“The overarching theme emerging is the absence of anyone with knowledge of ME and the reluctance of anyone to take responsibility. It would be too easy to blame any one individual; this is a system-wide problem and one that the NHS has responsibility to take leadership of to prevent further harm.”

Action for ME is calling for the government to release a delivery plan on ME/CFS initially promised by the Conservative government in 2022 but delayed multiple times.

Chowdhury called for more research funding. She said: “We would like the government to urgently accelerate strategic investment in ME research to ensure it achieves a commensurate level with other disease areas and identify treatments.

“There is a clear and unmistakable stigma around ME that stems from a lack of understanding. Still so little is known about this disease and its causes and we desperately need to see more research commissioned to address this.”

She said there needed to be “proper implementation” of the Nice guideline for ME/CFS, including the inclusion of ME in training.

The last words should go to Maeve. In her January 2021 statement she wrote: “My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.” She added: “This is not political, it is existential.”