What is chronic fatigue syndrome and what are the symptoms?

The condition affects around 250,000 people in the UK

An illustration of a woman with chronic fatigue syndrome (Getty Images/iStockphoto)

This week, East-London based singer and songwriter Nao revealed that she will not be going on tour to promote her upcoming album, And Then Life Was Beautiful, because she has chronic fatigue syndrome (CFS).

In an interview with The Independent, Nao, born Neo Jessica Joshua, said she has been feeling “burnt out” for three years.

“I’d been dealing with insomnia and going and going for such a long time, and one day I was getting up to go for a run and I just couldn’t move my legs. And quite quickly, my body began to deteriorate,” she explained, before disclosing that she has been diagnosed with CFS.

The “If You Ever” singer said she finds it difficult to explain her condition because she doesn’t think many people understand what it is.

The National Institute of Health and Care Excellence (NICE) estimates the prevalence of CFS, also known as ME (myalgic encephalomyelitis), to be “at least” 0.2 to 0.4 per cent of the UK population.

This means it affects one in 250 people or around 250,000 in total.

Here’s everything you need to know about the chronic condition.

What is chronic fatigue syndrome?

CFS or ME is a long-term illness that can affect people of all ages and genders, but it is most common in women. According to the NHS, it is also more likely to develop between the mid-20s or mid-40s.

The ME Awareness Association describes it as a “complex, fluctuating condition characterised by emotional, mental and physical fatigue”.

The cause of the condition is unknown, but experts believe it may be triggered by an infection, problems with the immune system or a hormonal imbalance. Other suggested causes include mental health problems, such as stress and emotional trauma and genetics.

What are the symptoms of chronic fatigue syndrome?

The symptoms of CFS/ME are broad, but most people with the condition report feeling extremely tired and generally unwell.

Other symptoms include disrupted sleep, muscle and joint pain, headaches, sore glands and nausea.

For those who suffer from the condition, it can also affect memory and make it difficult to concentrate.

The symptoms also tend to vary from day to day, with patients reporting that they have “good” days and “bad” days.

How is chronic fatigue syndrome diagnosed?

It can be extremely difficult for those with CFS and ME to get a correct diagnosis because its symptoms are extremely similar to those of other illnesses.

Another barrier to diagnosis, according to the ME Association, is that prominent symptoms in one patient may be quite different to those seen in others.

“Some patients are predominantly affected by mobility problems whereas others find aspects of cognitive dysfunction or pain to be a far more disabling component of their illness,” the association said.

There is also no test for CFS/ME. Instead, doctors use blood and urine tests to rule out other conditions such as anaemia, an underactive thyroid gland or liver and kidney problems.

“It can take a while for CFS/ME to be diagnosed because other conditions with similar symptoms need to be ruled out first,” the NHS says on its website.

The ME Association recommends that if debility after an infection lasts more than four weeks, doctors should consider the possible diagnosis of post-infection/viral fatigue syndrome.

“Where symptoms persist beyond three months and the person concerned has been unable to resume a normal way of life, serious consideration should then be given towards making a provisional diagnosis of ME/CFS,” it said.

Is treatment available?

There is no known pharmacological treatment or cure for ME/CFS.

Treatment and medical advice will differ from person to person depending on their symptoms.

In its latest draft guidance, published in November 2020, NICE said that some of the previous treatments used under the NHS to manage symptoms of CFS/Me should no longer be used.

It said that any treatment programmes based on fixed incremental increases in physical activity or exercise should not be offered for the treatment of ME.

It also emphasised that cognitive behavioural therapy is “not a treatment or cure for ME/CFS”, but maybe useful in helping some patients to manage their symptoms.

In August, NICE announced that it has paused publication of its updated draft guidelines because of backlash from some medical groups.

Patients who suffer from headaches and muscle and joint pain can use over-the-counter painkillers or might be prescribed stronger painkillers to be used in the short term.

Those with long-term pain may also be referred to pain management clinics.

NICE said that if a person experiences nausea as part of CFS/ME, this should be managed by eating “little and often”, snacking on dry starchy foods and sipping fluids.

Patients can also seek medical advice on how best to combat sleep problems, how much rest they should get and changes to their lifestyle in line with their symptoms.

How has the Covid-19 pandemic affected CSF/ME awareness?

Dr Charles Shepherd, the association’s medical advisor of the ME Association told The Independent that the Covid-19 pandemic and long-term effects of coronavirus, also known as “long Covid”, is creating awareness about the lasting impacts of viral infections on the human body.

“It’s making clinicians and researchers more aware of CFS/ME. People with long Covid are suffering from the same sort of debilitating fatigue that occurs in people with ME,” he says.

People with long Covid are also reporting other CFS/ME symptoms, such as disturbed sleep, muscle aches and joint pains.

This has led to an increase in patients being diagnosed with post-Covid CFS/ME.

Shepherd says he hopes this will help raise awareness that CSF/ME is a biomedical problem, and not a psychological condition.

“If you’ve got someone who hasn’t got lung problems, respiratory problems, and they’ve just got me CFS/ME type symptoms following Covid-19, in my view, these people probably have almost certainly got post-Covid ME,” he says.