Chronic fatigue syndrome (ME/CFS)

Rehana, 38, an architect in Uttara, went to a site visit in Purbachal on Sunday, climbed four flights of unfinished stairs, and felt fine. On Tuesday she could not lift her head from the pillow, and by Thursday she still could not follow a conversation. It has been like this, on and off, since a fever last year.

Her mother-in-law has a theory. “Ma, you need exercise. Walk around the lake every morning, like me.” Her nine-year-old daughter has a better one, and has stuck a note on the fridge with a drawing of a phone battery: “Ammu today: 20%. No park today.” Rehana laughs, and then tells her husband the thing no one seems to believe. “I sleep ten hours and wake up exhausted.”

An illustration drawn from common experience. The person is invented; the pattern is not.

Understanding ME/CFS

Myalgic encephalomyelitis or chronic fatigue syndrome, ME/CFS, is a long-term illness. UK national guidelines say it should be suspected when four things are all present: debilitating fatigue that is worsened by activity and not significantly relieved by rest; post-exertional malaise, a worsening of symptoms after activity that is often delayed by hours or days, out of proportion to the effort, and slow to recover; unrefreshing or disturbed sleep; and difficulty thinking, often called brain fog. It is diagnosed when these have lasted three months and are not explained by another condition. It is not the same as depression, though the two can occur together, and living with a misunderstood illness can bring low mood and anxiety of its own.

How common is ME/CFS?

In a meta-analysis of 45 articles covering more than a million people, the prevalence of ME/CFS was 0.89% using the most widely used case definition, and women were affected about one and a half to two times as often as men. The estimates varied widely with the definition and method used.

Signs and symptoms of ME/CFS

• Exhaustion that sleep and rest do not relieve
• A crash a day or two after effort, lasting days
• Waking unrefreshed, or sleep that is broken or too long
• Trouble finding words, concentrating or remembering
• Dizziness or feeling worse when standing for long

Treatment for ME/CFS

The guidelines recommend a careful medical assessment and blood tests to rule out other causes, including blood count, thyroid function, ferritin, blood sugar and coeliac screening. Management centres on energy management: learning one’s energy limit and planning activity within it, with support. The guidelines say not to offer graded exercise therapy, other programmes with fixed increases in activity, or general exercise programmes, and that cognitive behavioural therapy, if a person wants it, can help with managing symptoms and the distress of a chronic illness but is not a cure. A psychiatrist can assess and treat depression, anxiety or sleep problems that come alongside, and help the family understand what is happening.

What getting better can look like

Rehana’s good month might be an energy plan that spaces her site visits, a family that reads the battery note and believes it, and a week without a crash.

Common questions about ME/CFS

Is chronic fatigue syndrome psychological?

ME/CFS is recognised as a long-term illness, and it is not the same as depression. UK guidelines say CBT should not be assumed to be a cure; it may be offered only to help people manage symptoms and the distress of living with the illness. Depression or anxiety can occur alongside it and can be treated.

Should I push through with exercise if I have ME/CFS?

UK guidelines advise against graded exercise therapy and general exercise programmes for ME/CFS, because effort can worsen symptoms, often a day or more later. Instead they recommend energy management, staying within your energy limit, with professional support. Any change in activity should be flexible and guided.

When to see a psychiatrist

If exhaustion that rest does not fix has lasted weeks, especially with crashes after effort, see a doctor for assessment and tests. If low mood brings thoughts of not wanting to live, call 999.

Care here is personal: built around your history, your health and what you want to change, and reviewed with you as it goes.

Sources

• NICE guideline NG206, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (last reviewed 24 January 2025)
• Lim et al., Journal of Translational Medicine, 2020 (PMID 32093722)