Maeve Boothby-O’Neill’s last days Painful. The 27-year-old woman was bedridden all day, unable to chew food and no longer able to even sit up – she was seriously ill with myalgic encephalomyelitis, or ME, and was severely malnourished as a result.

his death has inspired warning from a coroner Unless things change, other people may die the same way. The coroner concluded that care for people with severe ME was “non-existent”.

Maeve died at home after being hospitalized on three separate occasions during the months before her death.

The tragedy has highlighted the plight of people like him, who feel they have no place to go.

Nicole, 52, has suffered from severe ME, also known as chronic fatigue syndrome, for six years. She spends most of her time in bed with the lights off and black curtains on the windows.

“My day results in me lying on my bed with my eyes closed and doing nothing,” she says.

She adds, “The lights cause really bad headaches and can make me vomit.” The sounds also make him nauseous.

Nicole’s 30-year-old daughter has given up work to care for her mother – something that Nicole finds heartbreaking, although her daughter does it with alacrity.

Nicole spoke to us after asking about people’s experiences of ME care on the ME Association’s Facebook page.

Donors say there are At least 240,000 people with me Living in the UK, although it is difficult to give exact figures. According to the charity ME Research UK, about one in four of these people has severe or very severe ME.

It is a complex, long-term condition that can affect every part of the body and is difficult to diagnose. ME affects everyone differently and its causes are still being investigated.

people with severe ME There may be persistent pain, increased sensitivity to touch and light, feeling extremely weak and sometimes difficulty speaking or swallowing. There are many different symptoms that cause significant disruption in everyday life.

Nicole’s biggest concern is food. She has lost 120 pounds (54 kg) over the past two years.

“If I try to eat my body shuts down – I have to spit the food out first because I get too tired to chew it,” she explains.

Nicole’s GP has referred her to a nutritionist but she has been waiting for almost a year.

She has been told she lives in the wrong area for specialist ME care.

During the investigation into Maeve’s death, Coroner Deborah Archer He said it became clear to him that there were no specialist hospitals or hospices, beds, wards or other health care provisions in England for patients with severe ME.

“Ninety-nine per cent of people with severe ME are at home and being looked after by relatives – bedridden, with limited communication and at risk of malnutrition,” says Dr Charles Shepherd, of the charity ME Association.

“GPs really struggle to know what to do.”

“Hospitals are just not designed for this,” says Sonya Chaudhary, chief executive of Action for ME.

“Going to hospital is a huge insult or shock to the body and there is a lack of understanding of what is necessary.”

The ME Association is calling for an audit to look at how well the NHS is providing recommended care, as set out in guidance from the National Institute for Care and Healthcare Excellence (NICE).

Their guidelines say that adults with ME should be referred to a specialist team so that a care and support plan can be developed.

People we spoke to said this doesn’t always happen.

Baroness Finlay of Llandaff was vice-chair of the committee that drew up guidelines on ME care, but she spoke to us in a personal capacity. He said there is some support for people but it is “very poor”.

“And the difficulty is that GPs may not know what’s available – they’re also busy with work and need to know about all the conditions.”

He said that it is a challenge to meet all the health needs of the local population.

Some people find it difficult to travel, making it difficult to create a specialist center in a central location.

Baroness Finlay acknowledged that it is difficult for people with severe ME to spend time in hospital wards because they are “not quiet, peaceful places”.

“It is complicated – you have doctors who are already on their knees. And the NHS estate is in poor condition.

“You’ve got to make the best of what you’ve got.”

The coroner’s report also highlighted the lack of funding for research into the causes of ME and the development of new treatments.

There is no cure for me, However some treatments can help manage some aspects of the condition. There is no single test that can diagnose me.

Baroness Finlay says there is a “great need” for more research.

A study currently taking place involves Professor Chris Ponting’s team at the University of Edinburgh, where researchers are looking into the genetics of the condition.

Around 18,000 people with ME in the UK have given DNA samples for analysis.

“We hope the results will tell us what is going wrong for so many people,” says Professor Ponting.

This will indicate where research should go next.

If, for example, genetics suggest that the immune system is involved then a whole army of immunologists working on other diseases could be brought on board.

That means they can try to quickly find new drug treatments “for this cruel and devastating disease.”

But Professor Ponting admits that no single research project can find the right treatment for everyone.

“People with ME in the UK will need to change research and clinical practice to treat ME in the same way as most people with other diseases.

“They were forgotten, ignored and abandoned.”

Maeve’s father Sean O’Neill has previously said “So far very little has changed” in the three years since Maeve’s death.

“Hopefully the coroner will spark something that will lead to change,” he said.

NHS England says improvements are needed across the health service and society as a whole to increase understanding and awareness of ME and to ensure that patients and their families are listened to.

The Department of Health and Social Care says it is committed to improving care and support for all people affected, and is launching a plan this winter to boost research funding and improve the outlook and lives of people with ME. Intends to publish.

A spokesperson said: “Our deepest sympathies go out to Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and this is a heartbreaking example of a patient falling through the cracks.

“Maeve and her family were forced to fight the disease along with a health care system that repeatedly misunderstood and rejected her.”

Need help? If you are affected by this story BBC Action Line web page It lists organizations ready to provide help and advice.