'I'm too tired to chew food but still can't get care for my ME'

Maeve Boothby-O’Neill’s final days were harrowing. The 27-year-old was confined to bed all day, unable to chew food and no longer able to sit up – she was severely ill with myalgic encephalomyelitis, or ME, and as a consequence severely malnourished.

Her death has prompted warnings from a coroner that other people could die in the same way unless things change. Care for people with the severest ME is “non-existent”, the coroner concluded.

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

This tragedy has highlighted the plight of people like her who feel they have nowhere to turn.

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

“My day results in me having my eyes covered laying in my bed doing absolutely nothing,” she says.

“The light causes really severe headaches, and it can make me vomit,” she adds. Sounds give her nausea too.

Nicole’s 30-year-old daughter has given up work to care for her mum – something Nicole finds heart-breaking, though her daughter does it readily.

Nicole spoke to us after we asked for people’s experiences of ME care on the ME Association Facebook page.

Charities say there are at least 240,000 people with ME living in the UK, though the exact figures are hard to pin down. About one in four of these people have severe or very severe ME, according to the charity ME Research UK.

It’s a complex, long-term condition which can impact 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 can be in constant pain, have hypersensitivity to touch and light, feel extremely weak and sometimes have difficulty speaking or swallowing. There are many different symptoms which cause significant disruption to everyday life.

A major concern for Nicole is food. She’s lost 120 pounds (54kg) in the past two years.

“My body just shuts down if I try to eat – I have had to spit food out before because I’m too tired to chew it,” she explains.

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

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

During the inquest into Maeve’s death, the coroner Deborah Archer said it became clear to her that there were no specialist hospital or hospices, beds, wards or other health care provision in England for patients with severe ME.

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

“GPs really struggle to know what to do.”

“Hospitals are just not set up for it,” says Sonya Chowdhury, chief executive at Action for ME.

“Going into hospital is a major insult or trauma to the body and there is a lack of understanding of what is needed.”

The ME Association is calling for an audit to see how much of the NHS is providing the 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.

The people we spoke to said this doesn’t always happen.

Baroness Finlay of Llandaff was vice-chair of the committee who compiled the guidelines on ME care, but spoke to us in a personal capacity. She said there is some support for people but it’s “very patchy”.

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

She said it’s a challenge to cater for all the health needs of a local population.

Some people find it difficult to travel, making it hard to have a specialist centre in a central location.

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

“It is complex – you’ve got clinicians who are on their knees already. And the NHS estate is in a poor condition.

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

Many people with ME recognise the strain the NHS is under – what’s less easy to understand, they say, are the attitudes of some of the healthcare staff they encounter.

Khalil Khabiri, 42, says his ME “has really deteriorated over the past two years” to the extent that he’s had to give up work in property renovation.

“My body wouldn’t let me do anything and I ended up letting customers down,” he says.

His first GP was very supportive and got him a diagnosis, he says, but another GP told him it was “all in his head”. He was also given information on talking therapies and depression.

“I admit it’s a depressing illness, but it’s not depression,” Khalil says.

Another person with severe ME, who does not want to be named, said she was faced with disdain when she went to hospital a few years ago.

She says the doctor told her that there was nothing they could do and that she should stop wasting their time.

She has a supportive GP now who admits they don’t know very much about the ME, but at least believes in her condition, she says.

She says many people are stuck in the past, believing that the condition is purely psychological.

“It’s the stigma that we’re all lazy and we just need to exercise ourselves back to wellness that has stopped us getting the help we need.”

Charities say doctors’ minds are slowly being changed to recognise that ME is a genuine medical condition, but there’s still a long way to go.

“Medical training is lacking,” says Sonya Chowdhury, from Action for ME, a view echoed by the coroner in Maeve’s case.

During the course of the inquest into Maeve’s death the coroner said it became clear that there was extremely limited training for doctors on ME and how to treat it.

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

There’s no cure for ME, though some treatments can help manage some aspects of the condition. There is no single test that can diagnose ME either.

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

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

Some 18,000 people with ME in the UK have given DNA samples to be analysed.

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

That will signal where research should go next.

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

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

But Prof Ponting acknowledges no single research project can find the right treatment for everyone.

“It is going to require a massive step-change across research and clinical practice for people with ME in the UK to be treated in the same way most other people with other diseases are treated.

“They are forgotten, ignored and forsaken.”

Maeve’s father Sean O’Neill has previously said that in the three years since Maeve died “there’s been very little change so far”.

“Hopefully the coroner sparks something that will drive change forward,” he added.

NHS England says improvements are needed within the health service and across society to increase understanding and awareness of ME and to make sure that patients and their families are listened to.

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

A spokesperson said: “Our deepest sympathies are with 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 heart-wrenching example of a patient falling through the cracks.

“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”

Need help? If you have been affected by this story the BBC Action Line web page features a list of organisations which are ready to provide support and advice.