There is a severe shortage of specialist hospital wards to treat patients with chronic fatigue syndrome as well as a lack of research into the disease, an inquest into the death of a sufferer has heard.
Maeve Boothby-O’Neill, who had been diagnosed with myalgic encephalomyelitis ( ME ), died at home in Exeter in October 2021.
The 27-year-old had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels, and later struggled to maintain “any normality due to fatigue”.
The inquest in Exeter is focusing on the last few months of Miss Boothby-O’Neill’s life by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.
She was also unable to read, watch TV or engage in conversations, and was only getting out of bed to use the toilet.
Miss Boothby-O’Neill had been admitted to the Royal Devon and Exeter Hospital three times for treatment for malnutrition, but was discharged each time and sent home.
Professor David Strain, who works at the Royal Devon and Exeter NHS Foundation Trust, told the inquest there are around 750,000 people in the UK with ME.
“In the UK the amount of research that is being done into diagnostic tests and treatment for it is woefully inadequate considering this is a disease affecting at least a quarter of a million people who were young, vibrant and fit, healthy adults and are left with this terrible debilitating disease,” he said.
“In my opinion I don’t think there is a ward anywhere in the country that is appropriate to manage ME patients.
“Since Maeve’s tragic case we have treated other people with severe ME and we have learnt and changed the way we manage it.
“Even in the best-case scenario I don’t believe there is a ward anywhere in the country at the moment that can provide the sort of care that is needed.”
The inquest heard that ME is a “multi-system disease” that can affect any part of the body.
“There are four characteristics of it, and that is post-exertion malaise, inappropriate and excessive fatigue, the cognitive impact of ‘brain fog’, and unrefreshed sleep,” Prof Strain said.
“The underlying causes are not well understood, and it is widely believed that it represents a collection of different diseases that all present with the same features.”
Prof Strain said post-exertion malaise is the feature most absent from other causes of fatigue and a “proportion” of people with ME suffer from a post-viral syndrome.
The inquest heard that the disease has been “tremendously stigmatised” because there is no diagnostic test.
Prof Strain said: “All we have to do is walk back 50 years and patients with diseases like multiple sclerosis – before we had a good diagnostic test – were put on gluten-free diets or sent to psychologists or psychiatrists.
“That disease was also stigmatised and included in the label of chronic fatigue. There are many, many reports that talk about this stigma.
“Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease.
“I think that is a travesty, and if this hearing alone can address (that) then that will be a massive step forward for the people who are living with ME today.
“It is a physical disease, and it has very specific, positive symptoms.”
Assistant Coroner Deborah Archer asked Prof Strain about the view of Miss Boothby-O’Neill’s family that there was a “culture of disbelief” among staff at the Royal Devon and Exeter Hospital that ME was a real illness.
“I start every conversation I have that this is a biological illness of unknown etiology that, just because we can’t do a test for it, doesn’t mean it is not real,” he said.
“When I open a conversation like that it is very difficult for people to tell me this doesn’t exist.
“In doing so I am potentially limiting people’s ability to argue with me, particularly around care.
“Outside of Maeve’s case, I have had very frank discussions with people trying to tell me this was a psychological illness or a psychosomatic illness.
“I have had very frank discussions about it and gone through the evidence base.
“The difficulty we still face with ME is because it is unlikely to be a single disease, there is no one diagnostic test. That is still a barrier we face today.”
The inquest heard that after Ms Boothby-O’Neill’s death Prof Strain wrote to the hospital’s chief executive, expressing concern that there were no facilities to care for similar cases in the future.
“There will be more Maeves and the trust is not equipped to deal with this, and we need to put a plan in place to make sure, if this happens again, that we don’t as an NHS fail people again with severe ME,” he said.
The inquest, which is scheduled to last two weeks, continues.
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