Her inquest has highlighted failings in the NHS’s treatment of ME – which came as no surprise to many who suffer from the disease. Patients, families and charities have been raising concerns for years. They hope this will mark a turning point in the way patients are treated.
What is ME?
Myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS, is a long-term illness that can affect many different parts of the body.
There are no official figures, but the charity Action for ME estimates that 250,000 people in the UK are affected – and an inquest said the real number could be as high as 750,000.
What are the symptoms of ME?
According to the NHS, ME/CFS has four main symptoms.
The first is a constant feeling of extreme fatigue, which Boothby O’Neill has experienced since she was 13. The inquest heard that the condition worsened after she finished her A-levels, after which she struggled to stay “calm because of the fatigue”.
The second is difficulty thinking, concentrating and remembering, sometimes called “brain fog.”
Sleep problems such as feeling tired when you wake up, insomnia, sleeping too much, or not sleeping enough are other symptoms.
Fourth, symptoms get worse after physical or mental activity and take several weeks to improve, sometimes called post-exertional malaise (PEM).
How does the NHS diagnose ME?
There is no specific test for ME/CFS; it can only be diagnosed after a doctor evaluates the symptoms and rules out other illnesses that may be causing the condition.
To be diagnosed with ME, your doctor will ask you questions about your symptoms and medical history, and may also take blood and urine tests.
How does the NHS treat ME?
There is currently no cure, but there are treatments available to help patients manage the condition and relieve symptoms.
Treatments may include cognitive behavioural therapy (CBT) and medication to treat sleep disorders and pain. Another option is energy management, where patients are given advice on how to make the most of their energy without making their symptoms worse.
Guidelines published in 2021 by the UK’s National Institute for Health and Care Excellence (Nice) decided that the NHS should stop recommending graded exercise therapy.
Are patients having trouble accessing healthcare?
Yes. “People with ME still face significant barriers to receiving a proper diagnosis and subsequent care,” Sonia Choudhury, chief executive of Action for ME, said this week.
“There are many healthcare workers doing an amazing job in extremely difficult circumstances, but the healthcare system continues to fail many people with ME. This must stop.”
Chowdhury said some people who visit their GP are still ignored or dismissed.
“Specialist services are uneven across the country, leaving many people struggling to get the services they need and resulting in unequal access to health care depending on your postcode.”
Even if a diagnosis is made, it can be hard to get proper treatment, she says.
“I still get contacted by patients whose doctors have prescribed exercise as a treatment for ME, despite it being clearly against the Nice guidelines published three years ago.”
Ms Chowdhury said data obtained under Freedom of Information laws showed NHS trusts were slow to implement national guidelines – some had made no changes at all, she added.
What challenges are healthcare workers facing?
Doctors told the inquest there was a serious shortage of specialist wards to treat patients.
Before her death, 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 for the Royal Devon and Exeter NHS Foundation Trust, told the inquest: “In my opinion, there are no wards anywhere in the country that are suitable for the treatment of ME patients.”
Dr Lucy Shenton, GP for Boothby O’Neill, told the inquest that doctors needed more support in treating people with ME: “We need an organisation within the NHS that provides specialist care for people with severe ME and easy access to this service.”
“While Maeve’s case is unique, it is common for GPs to receive little support for complex cases and little time allocated to them within working hours.”
What needs to change?
One NHS doctor who regularly sees ME patients said this week that major reforms were needed.
“For people with severe ME, there are almost no well-supported, standalone NHS services anywhere, so these patients end up in general hospitals on general wards which are ill-equipped to treat these patients properly.”
The doctor, who spoke on the condition of anonymity, added: “One of the wider issues is that many doctors currently working in the NHS were taught that people with ME had a functional, not a physical, illness. The problem is that a generation was actually taught that it wasn’t a biological illness. We now know that’s wrong.”
“There’s a lot of information that shows this is clearly a biological disease with a biological basis, and we’re in a position to start developing diagnostic tests and potentially find treatments in the future. But that generation is the one that’s currently determining health care policy, and this is a significant problem.”
In future, every area should have local services to see new cases and prevent the condition progressing, he said, adding that the NHS should set up more local specialist centres for the most seriously ill patients.
What kind of reforms do activists want?
“We need to ensure that people with ME and other illnesses such as long COVID-19 have access to local specialist services that are clinically guided,” Chowdhury said. The most seriously ill patients need home visits and access to social care, she added.
The campaign, called #ThereForME, is calling for a “transformation” in NHS care and highlighting the link between ME and long COVID, which are strikingly similar in symptoms and which viral infections are triggers.
“Research shows “Around 50% of long Covid patients have symptoms that directly resemble ME, including PEM, which is the defining symptom,” Choudhury said.
Is there research being done to better understand ME?
Yes. Researchers conducting the world’s largest study on the disease Decode MEwe hope to eliminate the stigma associated with the disease and work to develop potential treatments.
The cause of ME is unknown, but possible contributing factors include genetics, infections, immune system problems and hormonal imbalances. DecodeME aims to find the genetic cause by testing thousands of DNA samples taken from ME patients.
The research is led by Professor Chris Ponting from the Medical Research Council Human Genetics Unit at the University of Edinburgh and is funded by the Medical Research Council and the National Institute for Health and Care Excellence.
The more data researchers have about the causes of ME, the easier it will be to find a cure.
