Poor NHS care for ME was highlighted during her investigation. For many with the condition, it came as no surprise: patients, families and charities have been raising concerns for years. They hope this will mark a turning point in patient treatment.
What am I?
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a chronic condition that can affect 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. The study found that the true number could be as high as 750,000.
What are the symptoms of ME?
There are four main symptoms of ME/CFS, according to the NHS.
The first is being very tired all the time. Boothby O’Neill had experienced fatigue since the age of 13. This worsened after she completed her A-levels and she struggled to maintain “all normal levels of fatigue”, the inquest said.
Another is difficulty with thinking, concentration, and memory, sometimes called brain fog.
Sleep problems, such as feeling exhausted when you wake up, insomnia, oversleeping, or feeling like you haven’t slept properly are other symptoms.
Fourth, there are symptoms that worsen after physical or mental exertion and sometimes take weeks to improve. This is 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 conditions that can cause them.
If you are being assessed for a diagnosis of ME, GPs should ask you about your symptoms and medical history. You may also have blood and urine tests.
How does the NHS treat ME?
There is currently no cure. However, there are treatments that can help patients manage the condition and relieve symptoms.
They include cognitive behavioral therapy (CBT) and medication to help with sleep problems and pain. Another option is energy management: Patients are given advice on how to make the most of their energy without making their symptoms worse.
National Institute for Health and Care Excellence (Nice) guidance, published in 2021, ruled that the NHS should stop recommending graded exercise therapy.
Do patients have difficulty accessing services?
Yes. “People with ME continue to face significant barriers to accessing appropriate diagnosis and follow-up care,” Sonya Chowdhury, chief executive of Action for ME, said this week.
“There are many healthcare workers doing fantastic work in very challenging circumstances, but the healthcare system continues to fail many people with ME and this has to stop.”
Some people who come to the GP are still turned away or ignored, Chowdhury said.
“Specialist care is uneven across the country with many struggling to access the services they need and experiencing a postcode care lottery.
Even if they receive a diagnosis, accessing appropriate care can be a struggle, she said.
“We still hear from ME patients whose doctors have prescribed exercise to treat the condition, even though this clearly contravenes the Nice guidelines published three years ago.
Chowdhury said data obtained under the Freedom of Information Act suggested NHS trusts had been able to implement national guidelines. Some had made no changes at all, she added.
What are the challenges facing doctors?
Doctors told the inquiry there was a severe shortage of specialist units to treat patients.
Boothby O’Neill was admitted to the Royal Devon and Exeter Hospital three times for treatment of malnutrition before her death, but was discharged each time and sent home.
Professor David Strain, who works at the Royal Devon and Exeter NHS Foundation Trust, told the inquiry: “In my opinion, there is no department in the country that is more appropriate for managing ME patients.
Boothby O’Neill GP Dr Lucy Shenton told the inquest that doctors needed more help to treat ME patients. “There needs to be somewhere within the NHS that provides specialist care for patients with severe ME and an easy system to access that provision.”
“Although Maeve’s case was unique, it is common for GPs to manage complex cases with little support and no time allocated in their working day for these cases.
What needs to be changed?
One NHS doctor who regularly sees ME patients said this week that major reforms were needed.
“For patients with severe ME, there is virtually no independent NHS service ready to help. As a result, these patients often end up in regular hospitals in general wards that are simply not equipped to care for these patients properly.”
The doctor, speaking on condition of anonymity, added: “One of the wider problems is that many of the doctors working in the NHS today were taught that people with ME had a functional rather than a physical disease. The problem is that the generation was actually taught that it was not a biological disease. We now know that is wrong.
“We have a wealth of information that shows that this is clearly a biological disease with a biological basis, and we are in a position to begin developing diagnostic tests and hopefully a cure in the future.” But it’s the generation that is setting the pharmaceutical policy at the moment, and that’s a significant problem.”
In the future, there should be a local service in each region to see new patients and try to prevent their progression, the doctor said. The NHS should add regional specialist centers for the most serious cases, they added.
What reforms would campaigners like to see?
“We need to ensure that people with ME, and those with conditions such as prolonged Covid, have access to local specialist services that are clinically led,” Chowdhury said. Those with the most severe forms need home visits and access to social care, she added.
A campaign called #ThereForME is calling for a “transformation” of NHS care, as well as highlighting the link between ME and chronic Covid, which share striking similarities in symptoms and are caused by viral infections.
“Studies suggest that approximately 50% of people with prolonged Covid have symptoms that directly reflect ME, including its main symptom PEM,” said Chowdhury.
Is research being done to better understand ME?
Yes. Researchers behind the world’s largest study of the disease, DecodeME, hope to tackle the stigma associated with it as well as work on a potential treatment.
It is not known how ME is caused. But potential triggers include genetics, infections, immune system problems, and hormonal imbalances. DecodeME aims to find a genetic cause by testing thousands of individual DNA samples from people living with ME.
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 Research.
The more data scientists have about the cause of ME, the easier it will be to find treatments.
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