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

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

Maeve, an intelligent, hard-working, determined young woman, and her loved ones struggled for years to get help, but the treatment – ​​and the basic understanding of myalgic encephalomyelitis/chronic fatigue syndrome – simply wasn’t available.

She wrote: “I can’t describe how terrifying it is to find out there are no doctors to help you, they don’t even know what’s wrong with you. I’m fighting for a chance to live.”

By March 2021, her ME had become so severe that she could no longer sit up, hold a cup to her lips or chew. She was admitted to hospital, desperate to find a way to get food and drink down. Despite the pain she was in, she clearly still wanted to live, but eventually she could barely 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, aged 27.

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

During the gruelling two-week investigation, her parents, Sarah Boothby and Sean O’Neill, spoke of their desperate attempts to get help from doctors and their desire to improve the treatment of people in her situation, while keeping a close eye on ME campaigners and patients with the disease.

The hope is that her story will be seen as a milestone in history, leading to changes in the way people with ME are treated and viewed.

Everyone agrees that Maeve was an exceptional person. She was a lively 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 fatigue began after she and her mother contracted a mild virus when Maeve was 12.

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

It was hard to figure out what was wrong. A pediatrician told Maeve that her symptoms were “all in her head.” She once asked her mother, “Do you think I’m making this up?”

Despite her persistent fatigue, she did well at school and received offers to Russell Group universities. In 2011, she was finally diagnosed with ME in a Bristol hospital. She was unable to take up a place at university and her condition deteriorated steadily over the next 10 years.

She was determined to be a good patient and found out everything she could about ME. But, her father said: “Medicines and doctors didn’t know what to do. Maeve was subjected to treatments that made her worse, such as exercise programs, delayed diagnosis, ignorance, apathy and stigma.

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

During the inquest, Dr David Strain, an honorary adviser at the Royal Devon and Exeter Foundation Trust who was involved in Maeve’s treatment, said the condition was stigmatised because there was no diagnostic test for it.

He said, “Even today there are people who have gone through the historical medical schools and have not recognized this as a physical disease. That is a shame.”

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

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

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

In March 2021, it became increasingly difficult for her to eat or drink and she told her mother: “I need someone who knows how ill I am.” She was taken to the Royal Devon and Exeter Hospital (RDH) but was discharged the same day.

Her father was in hospital at the same time, being treated for cancer. He said: “It seems harsh 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 at around the same time. I underwent state-of-the-art keyhole surgery. My treatment was swift, expert and effective. Maeve presented as acutely ill – immobile, weak, in pain, unable to digest food and at risk of malnutrition – only to be told that nothing could be done. Within hours of her admission, she was back in an ambulance and sent home.

“In my opinion it was very discriminatory. If Maeve had had those symptoms but with a diagnosis other than ME, I think she would have been treated very differently.”

In June 2021, Maeve wrote to her GP, Dr Lucy Shenton: “I really need help with eating. I’m hungry. I want to eat. I haven’t been able 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 in person at the inquiry because she had suffered post-traumatic stress disorder as a result of the case. But in a statement read out in court, Shenton summarised the issues neatly: “There needs to be more funding and research into ME to provide the evidence and guidelines that clinicians can work with.

“There needs to be specialist care somewhere in the NHS for patients with severe ME and a simple mechanism to access that provision. There needs to be a way for the patient voice to be heard in meetings. There needs to be clear systems in place with appropriate safety nets.”

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

Maeve made it clear that she wanted to be discharged from hospital. Her mother said: “If she was going to starve to death with severe ME, she wanted to be in the comfort of her own home and in the care of her loved ones.”

O’Neill told the inquest it had been difficult to provide his daughter with the palliative care she needed when she became seriously ill, as there were still suspicions her illness had been invented. Boothby said she died “in the company of those she loved”.

Sonya Chowdhury, the General Manager of Action for MEsaid she hoped Maeve’s case would bring about change. She said: “It is clear that the NHS has not yet developed the framework to provide effective support for people with severe and very severe ME.

“There is no clear pathway to 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 of ME is lacking due to the vast underinvestment in research over the years, but that is no excuse for what we have heard about Maeve’s situation.

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

Action for ME is calling on the government to publish a delivery plan for ME/CFS originally promised by the Conservative government in 2022, but delayed several times.

Chowdhury called for more research funding. She said: “We want the government to urgently accelerate strategic investment in ME research to ensure it reaches a comparable level to other disease areas and to identify treatments.

“There is a clear and undeniable stigma surrounding ME which stems from a lack of understanding. There is still so little known about this disease and its causes and we urgently need more research to address this.”

She said there was a need for ‘correct implementation’ of the Nice guideline for ME/CFS, including the inclusion of ME in training.

The final words must 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 community to abandon the false idea that behavioural therapies can cure ME.” She added: “This is not political, it is existential.”