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

What is 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 have been affected. The research suggested the real figure could be as high as 750,000.

What are the symptoms of ME?

According to the NHS, there are four main symptoms of ME/CFS.

The first is that she feels extremely tired all the time. Boothby O’Neill had suffered from fatigue since she was 13. This became worse after she finished her A-levels and she later struggled to “maintain any sense of normality due to fatigue”, the inquest heard.

The second cause is difficulty with thinking, concentration and memory, also known as brain fog.

Sleep problems, such as feeling exhausted when waking up, insomnia, sleeping too much, or feeling like you haven’t slept well, are also symptoms.

The fourth is that symptoms get worse after physical or mental activity and sometimes take 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 evaluates the symptoms and rules out other conditions that could be causing the symptoms.

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 currently no cure. However, there are treatments that can help patients manage the condition and relieve symptoms.

They include cognitive behavioral therapy (CBT) and medications to help with sleep problems and pain. Another option is energy management: patients are given advice on how to best use their energy without worsening their symptoms.

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

Are patients having difficulty accessing care?

Yes. “People with ME still face significant barriers to obtaining the correct diagnosis and subsequent care,” Sonya Chowdhury, the CEO of Action for ME, said this week.

“There are many healthcare professionals doing fantastic work in very challenging circumstances, but the healthcare system continues to fail many people with ME and this must stop.”

Some people who present to their GP are still ignored or disregarded, Chowdhury says.

“Specialist services are spread across the country, leaving many people struggling to access the services they need and facing a postcode lottery of care.”

Even if they get a diagnosis, it can be challenging to get the right care, she says.

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

Chowdhury said data obtained under Freedom of Information laws suggested NHS trusts had been slow to implement national guidance, with some not making any changes at all, she added.

What challenges do medical professionals face?

Doctors stated during the survey that there is a serious shortage of specialist departments to treat patients.

Boothby O’Neill was admitted to the Royal Devon and Exeter Hospital three times for treatment of malnutrition before she died, but was discharged and sent home each time.

Prof David Strain, from the Royal Devon and Exeter NHS Foundation Trust, told the inquiry: “I don’t think there is a department anywhere in the country that is suitable for treating ME patients.”

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

“While Maeve’s case was unique, it is common for GPs to treat complex cases with little support and without time allocated in their working day to deal with these cases.”

What needs to change?

An NHS doctor who regularly sees ME patients said this week that major reforms are needed.

“For patients with severe ME, there are almost no dedicated NHS services equipped to help. As a result, these patients often end up in mainstream hospitals on general wards that are simply not equipped to care for these patients properly.”

The doctor, who asked not to be named, added: “One of the bigger problems is that many of the doctors working in the NHS today have been taught that people with ME have a functional rather than a physical illness. The problem is that that generation has basically been taught that this is not a biological illness. We now know that that is not true.

“We have a lot of information that shows that this is clearly a biological disease with biological underpinnings, and we are in a position to start developing diagnostic tests and hopefully have a cure in the future. But that generation is the one that is currently driving drug policy, and that is a big problem.”

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

What reforms would campaigners like to see?

“We need to make sure that people with ME, and people with illnesses like long 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 demanding a ‘transformation’ in NHS care and is highlighting the link between ME and long Covid, which share striking similarities in symptoms and are caused by viral infections.

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

Is research being done to better understand ME?

Yes. Researchers behind the world’s largest study of the condition, DecodeMIJhope to tackle the stigma associated with this and work towards a possible treatment.

It is not known what causes ME. However, possible 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 with ME.

The research is led by Prof 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 researchers have about the cause of ME, the easier it will be to find treatments.