Chronic Fatigue Syndrome (ME/CFS): Symptoms and Management

What is chronic fatigue syndrome?

Chronic fatigue syndrome is a long-term illness that causes extreme fatigue and other symptoms that limit your ability to work, study and manage daily life. Its full name is myalgic encephalomyelitis/chronic fatigue syndrome, shortened to ME/CFS.¹

It is far more than being tired. The fatigue is not the result of unusual effort, and it does not improve with rest.¹ Ordinary tiredness has many more common causes. See why am I always tired?

ME/CFS symptoms

Doctors look for a core group of symptoms:^1,2

• A large drop in what you can do compared with before you were ill, lasting six months or more, with profound fatigue
• Post-exertional malaise. Symptoms get worse after physical or mental effort that you would once have managed easily. The worsening can begin hours or days later, usually lasts at least 24 hours, and can take weeks to settle
• Unrefreshing sleep. You wake feeling as though you haven’t slept
• Thinking problems, often called brain fog: poor memory and concentration
• Feeling worse when upright. Dizziness, light-headedness or a racing heart on standing

Other common symptoms are muscle and joint pain, headaches and a sore throat.¹

What a “crash” is like

Post-exertional malaise is the feature that most sets ME/CFS apart. In interviews, patients described it as exhaustion, muddled thinking and muscle symptoms affecting the whole body, hard to predict, and needing complete bed rest to recover. After a formal exercise test, almost all said symptoms started within 24 hours and peaked within 72.³

How severe can it be?

It varies a great deal:¹

• Mild. You have less energy and do fewer activities
• Moderate. Your mobility is reduced and you need to rest often
• Severe. You may be unable to leave the house and need help with daily care. People with very severe ME/CFS can be bedridden

How common is it?

A meta-analysis of 45 studies covering more than a million people put the prevalence at about 0.7 per cent, with rates in women roughly one and a half times those in men.⁴ It is most common in adults aged 20 to 50, and it also affects children and teenagers.¹

Many people who have it don’t know. One estimate is that up to 91 per cent of people with ME/CFS in the United States have never been diagnosed.⁵

What causes ME/CFS?

The cause is not fully understood. It often starts after an infection, including glandular fever, Ross River virus and Q fever.¹

An Australian study followed 253 people from the time they caught one of those three infections. Six months later, 11 per cent met the criteria for chronic fatigue syndrome. The risk was the same whichever infection they’d had, and it was predicted mainly by how severe the initial illness was, not by psychological factors.⁶

Research has found changes in the immune system, the nervous system and energy metabolism in people with ME/CFS, but no single explanation and no diagnostic marker yet.⁷

ME/CFS and long COVID

Long COVID and ME/CFS overlap heavily. Both commonly follow a viral infection, and many people with long COVID have the same pattern of fatigue, crashes after exertion, brain fog and problems when upright.⁸ About half of people who don’t recover from COVID meet the criteria for ME/CFS.⁹

How is ME/CFS diagnosed?

There is no single test. Your doctor will ask about your symptoms, examine you and order tests to rule out other causes of fatigue, such as anaemia, thyroid problems, sleep apnoea and depression. A diagnosis may be made when symptoms have lasted six months or more in an adult, or three months in a child or teenager.¹

Managing ME/CFS

There is no cure, but there are ways to manage symptoms.¹

Pacing

Pacing means balancing activity and rest so that you stay within your energy limits and avoid setting off a crash.¹

• Keep a diary to learn which activities, and how much, bring on symptoms
• Plan your day, with rest breaks built in before you need them
• Stop when you notice early warning signs
• Save your energy for what matters most to you
• Some people use a heart rate monitor to stay within a safe range¹

The research on pacing is limited. A review of 17 studies found that 11 reported benefits, four found no effect and two found people did worse, and the studies were of poor to fair quality.¹⁰ Current guidelines still recommend managing energy in this way, because it is low risk and aims to prevent crashes.^1,11

Why graded exercise is no longer recommended

Graded exercise therapy, where activity is increased in fixed steps regardless of symptoms, used to be standard advice. It is no longer recommended for ME/CFS and may be harmful.¹ The United Kingdom’s national guideline, updated in 2021, says it should not be offered.¹¹

That is not the same as “never move”. Gentle activity within your limits, adjusted to how you are on the day, is part of pacing.

Treating individual symptoms

Your doctor can help with sleep problems, pain, headaches and dizziness on standing, and can involve other health professionals such as an occupational therapist or psychologist.¹ Living with ME/CFS is hard, and it puts people at risk of depression, so support matters.¹

Does ME/CFS go away?

For most adults it is a long-term condition. A systematic review found that a median of 5 per cent of people recovered fully, while about 40 per cent improved over time.¹² Around one in five get worse.⁹ The outlook is generally better for children and teenagers.

When to see a doctor

• Fatigue that has lasted more than a few weeks and isn’t explained by your circumstances
• You feel much worse the day after activity you used to manage
• You haven’t recovered several months after an infection, including COVID-19
• Fatigue is stopping you from working, studying or looking after yourself

Emerge Australia runs a support line for people with ME/CFS on 1800 865 321.¹

References

1. healthdirect. Chronic fatigue syndrome (ME/CFS).
2. Clayton EW. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness. JAMA. 2015;313(11):1101-2.
3. Stussman B, Williams A, Snow J, et al. Characterization of Post-exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front Neurol. 2020;11:1025.
4. Lim EJ, Ahn YC, Jang ES, et al. Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). J Transl Med. 2020;18(1):100.
5. Bateman L, Bested AC, Bonilla HF, et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clin Proc. 2021;96(11):2861-2878.
6. Hickie I, Davenport T, Wakefield D, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006;333(7568):575.
7. Walitt B, Singh K, LaMunion SR, et al. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. Nat Commun. 2024;15(1):907.
8. Davis HE, McCorkell L, Vogel JM, et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol. 2023;21(3):133-146.
9. Emerge Australia. What is ME/CFS?.
10. Sanal-Hayes NEM, Mclaughlin M, Hayes LD, et al. A scoping review of 'Pacing' for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic. J Transl Med. 2023;21(1):720.
11. National Institute for Health and Care Excellence (UK). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NG206).
12. Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Lond). 2005;55(1):20-31.