Chronic fatigue syndrome (ME/CFS): symptoms, diagnosis and treatment

The NHS says there are 4 main symptoms. The first is extreme tiredness (fatigue) that does not go away with rest or sleep. Most people describe it as overwhelming and a different type of tiredness from what they have felt before, and it can make everyday tasks such as showering or going to work or school difficult.

The second is sleep problems: not feeling refreshed after sleeping, waking repeatedly, feeling stiff, tired or flu-like on waking, or being very sleepy in the day. The third is difficulty with thinking, memory and concentration, often called brain fog, which can include trouble recalling words, names or numbers, difficulty focusing on more than one thing, and being slow to speak or react.

The fourth is post-exertional malaise (PEM). The NHS says symptoms can get worse after physical or mental activity such as socialising or studying, the worsening can start hours or days after the trigger, and recovery can take weeks.

• Muscle or joint pain.

• Headaches.

• A sore throat or sore glands that are not swollen.

• Flu-like symptoms.

• Dizziness or feeling sick, and fainting on standing up.

• Fast or irregular heartbeats (palpitations).

• Muscle twitches or spasms.

• Sensitivity to light, sound, touch, taste and smell, and intolerance to alcohol or certain foods or chemicals.

The NHS uses the name myalgic encephalomyelitis (ME), also called chronic fatigue syndrome or ME/CFS. It is a long-term illness rather than ordinary tiredness, and the symptoms are similar to those of several other illnesses, which is why the NHS stresses seeing a GP for a correct diagnosis.

People with ME/CFS typically need to adapt their daily routine and pattern of activity on a long-term basis. The NHS says there may be periods when symptoms get better or worse, and a worsening for a period of time is called a setback or relapse.

The NHS says the cause of ME/CFS is unknown. It lists setbacks as possibly triggered by factors such as an infection or an unplanned activity, but also says sometimes there is no clear cause. NICE says ME/CFS is recognised on clinical grounds alone, and that there is currently no diagnostic test for it.

The NHS says a GP should ask about your medical history and examine you, and may offer blood and urine tests to rule out conditions such as anaemia, an underactive thyroid, or liver and kidney problems. It can take a while to reach a diagnosis because other conditions with similar symptoms need to be ruled out first.

NICE says doctors should consider ME/CFS if all of the following are present and not caused by another condition: fatigue, sleep problems, problems with thinking and concentration, and symptoms made worse by physical or mental activity. NICE advises that ME/CFS is suspected after symptoms have persisted for a minimum of 6 weeks in adults and 4 weeks in children and young people, and that the diagnosis can only be confirmed after 3 months of persistent symptoms. Adults can be referred to a specialist ME/CFS team to confirm the diagnosis and develop a care and support plan.

The NHS says there is no cure, but there are treatments that may help manage the condition and relieve symptoms. NICE says people should be offered a treatment plan tailored to their symptoms, developed with the person and reviewed regularly.

Energy management is the approach the NHS describes: learning how to make best use of your energy day to day without making symptoms worse, sometimes using a diary or phone app. NICE explains it is not curative and is a self-management strategy led by the person with support from a healthcare professional in a specialist team. CBT may be discussed as an option to help people manage a long-term condition, but the NHS stresses it does not directly treat the symptoms of ME/CFS and the therapist should have specific training and experience in ME/CFS.

There is no specific medicine for ME/CFS, but medicines can relieve some symptoms. The NHS says over-the-counter painkillers can ease headaches and muscle and joint pain, a GP can prescribe stronger painkillers for short-term use, and antidepressants such as low-dose amitriptyline may help people with pain or trouble sleeping. NICE says not to offer medicines or supplements to cure ME/CFS.

The NHS says you should eat regularly and have a healthy, balanced diet, and be offered practical advice if symptoms make shopping or preparing food difficult. People with severe ME/CFS may be at risk of malnutrition and may be referred to a dietitian with experience of the condition.

For sleep, you should be given advice about establishing a normal sleeping pattern, changing it gradually. The NHS notes that too much sleep does not usually improve symptoms and daytime sleeping can stop you sleeping at night. You will probably need to rest in the day; one suggestion is limiting each rest period to 30 minutes and learning relaxation techniques.

During a setback or relapse, the NHS says clinicians can help by including more breaks within your current levels of activity and teaching relaxation and breathing techniques. It also says complete rest has no evidence that it helps.

The NHS describes four levels of severity. Mild: you can care for yourself but may have problems moving around, and may be able to work or study but have little energy left. Moderate: difficulty moving around and with daily activities, a need to rest often, and possibly not being able to work. Severe: only very basic daily tasks, possibly housebound or bedbound. Very severe: all time spent in bed, fully dependent on carers, and extreme sensitivity to light and noise.

The NHS adds that if you have to take time off work you may feel able to return in future but a sudden return to full-time work may not be possible, and that by law your employer must make reasonable adjustments to help you do your job.

The NHS says ME/CFS can affect anyone, including children. NICE advises that for children and young people ME/CFS is suspected after 4 weeks of persistent symptoms rather than 6, that diagnosis is made after assessment by a paediatrician, and that children are referred to a paediatric ME/CFS specialist team to confirm the diagnosis and develop a care plan. It also says to ensure the child's voice is heard through a child-centred approach.

The NHS says to see a GP if you think you may have ME/CFS, because the symptoms are similar to those of other conditions and a correct diagnosis matters. A GP should also be able to refer you to a ME/CFS specialist if they think it would help. If symptoms are severe, the NHS says a specialist should be involved in treatment.

If you have been diagnosed and your symptoms are worsening or changing, NICE says you should be able to return for review. For other concerns, NHS 111 can advise.

On the NHS, diagnosis usually starts with your GP, who can refer you to a specialist ME/CFS service. NICE advises that adults and children are referred to an ME/CFS specialist team to confirm the diagnosis and develop a care plan.

Private consultations are available in some specialties, but the NICE guidance applies to both routes. It is sensible to check that any programme you are offered follows current NICE advice, and in particular does not rely on graded exercise or the Lightning Process, which NICE says not to offer.