What is ME and why is the NHS approach to it being criticised?

Maeve Boothby O’Neill had myalgic encephalomyelitis (ME) and died at home in Exeter in October 2021 at the age of 27.

Poor NHS care for ME was highlighted at her inquest. For many with the condition, that did not come as a surprise: patients, families and charities have raised concerns for years. They hope this will mark a turning point in the way patients are treated.

So what is ME, how does the NHS treat the condition and what changes are needed?

What is ME?

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body.

There are no official figures but Action for ME, a charity, estimates 250,000 people are affected in the UK. The inquest heard the true number may 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 feeling extremely tired all the time. Boothby O’Neill had experienced fatigue since the age of 13. This got worse after she completed her A-levels, and she later struggled to maintain “any normality due to fatigue”, the inquest heard.

The second is difficulty with thinking, concentration and memory, which is sometimes referred to as brain fog.

Sleep problems, such as feeling exhausted when you wake up, insomnia, sleeping too much or feeling like you have not slept properly are another symptom.

The fourth is symptoms getting worse after physical or mental activity and sometimes taking weeks to get better. 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 assesses the symptoms and rules out other conditions that may be causing them.

If you are being assessed for an ME diagnosis, 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 no cure at present. However, there are treatments that may help patients manage the condition and relieve symptoms.

They include cognitive behavioural therapy (CBT) and medicine to help with sleep problems and pain. Another option is energy management: patients are given advice about making the best use of their energy without making their symptoms worse.

A National Institute for Health and Care Excellence (Nice) guideline, published in 2021, ruled that the NHS should stop recommending graded exercise therapy.

Do patients struggle to access care?

Yes. “People with ME continue to face significant barriers in accessing appropriate diagnoses and subsequent care,” Sonya Chowdhury, the chief executive of Action for ME, said this week.

“There are many healthcare practitioners who do a fantastic job in very challenging circumstances, but the healthcare system continues to fail many with ME and this must stop.”

Some people presenting to their GP are still dismissed or ignored, Chowdhury said.

“Specialist services are patchy across the country with many people struggling to access the services they need and experiencing a postcode lottery of care.”

Even if they do get a diagnosis, accessing appropriate care can be a struggle, she said.

“We still hear from patients with ME whose doctors have prescribed them exercise to treat their condition, even though this is clearly against the Nice guidelines issued three years ago.”

Chowdhury said data obtained under freedom of information laws suggested NHS trusts had been slow to implement the national guidelines. Some had not made any changes at all, she added.

What are the challenges faced by medical professionals?

Doctors told the inquest there was a severe shortage of specialist wards to treat patients.

Boothby O’Neill was admitted to the Royal Devon and Exeter hospital three times for treatment for malnutrition before her death, but was discharged each time and sent home.

Prof David Strain, who works at the Royal Devon and Exeter NHS foundation trust, told the inquest: “In my opinion I don’t think there is a ward anywhere in the country that is appropriate to manage ME patients.”

Dr Lucy Shenton, Boothby O’Neill’s GP, told the inquest doctors needed more help to treat ME patients. “There needs to be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision.

“Although Maeve’s case was unique, GPs managing complex cases with little support and no time out allotted in their working day for these cases is commonplace.”

What needs to change?

One NHS doctor who regularly sees ME patients said this week that major reform was required.

“For patients with severe ME, there are almost no standalone NHS services anywhere that are geared up to help. That is why these patients often end up in regular hospitals on general wards that are simply not equipped to care for these patients properly.”

Speaking on condition of anonymity, the doctor added: “One of the wider problems is that many of the doctors working in the NHS today were taught that people with ME have got a functional rather than physical illness. The problem is, that generation was actually taught that this is not a biological illness. We now know that is wrong.

“We have a host of information demonstrating that this clearly is a biological illness with biological underpinnings, and we’re in a position to start developing diagnostic tests and hopefully have a cure in the future. But that generation are the ones currently setting medicine policy and that’s a significant problem.”

In future, there should be a local service in every area to see new patients, and try to prevent them progressing, the doctor said. The NHS should add regional specialist centres for the most severe cases, they added.

What reforms would campaigners like to see?

“We need to ensure that people with ME, and those with illnesses such as long Covid, have access to local specialist services that are clinically led,” said Chowdhury. Those with the most severe forms need home visits and access to social care, she added.

A campaign called #ThereForME is demanding a “transformation” in NHS care, as well as highlighting the link between ME and long Covid, which share striking similarities in terms of symptoms and being triggered by viral infections.

“ Research indicates that about 50% of people with long Covid have symptoms that directly mirror ME, including its hallmark symptom of PEM,” said Chowdhury.

Is research being done to better understand ME?

Yes. Researchers behind the world’s largest study of the condition, DecodeME , hope to tackle the stigma associated with it as well as working towards potential treatment.

It is not known how ME is caused. But potential triggers include genetics, infections, immune system problems and hormone imbalances. DecodeME aims to find a genetic cause by testing thousands of individual DNA samples from people living with ME.

The study is being led by Prof Chris Ponting, of the Medical Research Council Human Genetics Unit at the University of Edinburgh, and is being funded by the Medical Research Council and the National Institute for Health and Care Research.

The more data researchers have about the cause of ME, the easier it will be to find treatments.