Quick answers to the questions people ask most often. Each answer links to a page with more detail.
What is ME/CFS?
ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is a long-term, physical illness that affects the body's energy production, immune system and nervous system. Its defining feature is post-exertional malaise (PEM): a worsening of symptoms, often 12–72 hours after physical, mental or emotional effort. Other core symptoms are unrefreshing sleep, brain fog and feeling worse when upright. It is not psychological, and it is not ordinary tiredness.
Is chronic fatigue syndrome the same as ME?
Mostly, yes. Today most health bodies treat myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) as one illness, written ME/CFS. The names come from different histories. Older CFS definitions (e.g. Fukuda 1994) didn't require post-exertional malaise, while modern criteria do. "Chronic fatigue" on its own is a symptom with many causes, not the same as chronic fatigue syndrome.
What is post-exertional malaise (PEM)?
PEM is a crash that follows doing more than your body can handle that day. It typically begins 12–72 hours after the effort and can last days, weeks or longer. Triggers include physical activity, thinking, conversation, emotional stress and sensory overload. PEM is the hallmark symptom that distinguishes ME/CFS from other fatiguing illnesses.
What causes ME/CFS?
The exact cause isn't known. Most cases begin after an infection, commonly glandular fever (Epstein-Barr virus) or COVID-19. Genes play a part: the DecodeME study found eight genetic signals, mainly in the immune and nervous systems. Researchers think a 'sickness response' in the brain that fails to switch off, reduced blood flow and impaired cellular energy production may keep the illness going.
Is Long COVID the same as ME/CFS?
Not always, but they overlap a lot. Long COVID is an umbrella term for health problems lasting three months or more after COVID-19. About 1 in 20 adults infected with COVID go on to meet ME/CFS criteria, and among people seen in fatigue clinics for long COVID it's around half, especially those with post-exertional malaise. Others have different problems such as lung or heart damage.
What's the difference between ME/CFS and POTS?
POTS (postural orthostatic tachycardia syndrome) is a problem with heart rate and blood flow on standing: heart rate rises by 30 or more beats per minute within 10 minutes. ME/CFS is defined by post-exertional malaise after any exertion. They often occur together, and treating POTS (fluids, salt, compression, medication) can ease dizziness and some brain fog, but it doesn't treat PEM.
How is ME/CFS diagnosed?
There's no single blood test yet. A doctor diagnoses ME/CFS from the symptom history, especially post-exertional malaise, symptoms lasting six months or more, and tests that rule out other causes such as thyroid problems, anaemia, coeliac disease and sleep apnoea. Routine blood tests are usually normal in ME/CFS.
Is there a cure for ME/CFS?
Not yet. No drug is approved specifically for ME/CFS. Management focuses on pacing (staying within your energy limits), treating related problems such as POTS and sleep disorders, and symptom relief. Many clinical trials are under way, and some people improve substantially, especially with early recognition and careful pacing.
Does exercise help ME/CFS?
It depends, and it's genuinely debated. Rigid graded exercise therapy (GET), which increases activity on a schedule, is no longer recommended by the UK's NICE guideline (2021) or the US CDC: the trials behind it mostly measured self-reported fatigue in people who weren't required to have post-exertional malaise, and many patients report being made worse. Some clinics and medical bodies still use slow, symptom-led programmes and point to modest short-term benefit in trials. If you have post-exertional malaise, the safest approach is to pace and stabilise first, then consider only small, reversible increases with a clinician who understands PEM. If you don't have PEM, gradually increased exercise is more likely to be appropriate.
What is pacing?
Pacing means managing physical, mental and emotional activity to stay inside your available energy, so you avoid post-exertional malaise. It includes setting activity for your bad days rather than good days, resting before you're exhausted, breaking tasks up, and often using a heart rate monitor to spot over-exertion.
Does low-dose naltrexone (LDN) work for ME/CFS?
The evidence is mixed. Open-label reports suggest many people feel better, and Griffith University's lab studies show LDN restores a faulty immune-cell ion channel (TRPM3). However, the first large placebo-controlled trial (160 people with post-COVID fatigue, full results October 2026) found LDN no better than placebo on fatigue, pain, symptoms, daily steps or quality of life, and more than 40% of the placebo group improved. People who had ME/CFS before COVID weren't included, so ME/CFS trials are still needed. LDN is cheap and generally safe, so a three-month trial with a doctor is reasonable, but it isn't a sure thing.
Are there ME/CFS clinical trials in Australia?
Yes. They include the TRI-ME trial of trimetazidine (Deakin University / Barwon Health, Victoria) and Griffith University NCNED's research studies and upcoming low-dose naltrexone trial (TreatMELC). You can also join the AusME registry and biobank run by Emerge Australia. Our trials page lists contacts for each.
How do I find a doctor who understands ME/CFS in Australia?
Emerge Australia's national directory lists GPs, clinics and allied health services that see people with ME/CFS and Long COVID, and its nurse support line (1800 865 321) can help. Griffith University's NCNED has also shared a list of GPs, mostly in south-east Queensland and northern NSW, including LDN prescribers.
Can people recover from ME/CFS?
Some people improve substantially, particularly when the illness is recognised early and they pace carefully. Others remain unwell for years, and about one in four people are housebound or bedbound at some point. Relapses can follow new infections or periods of overload.
How many people have ME/CFS?
Australia's NHMRC estimates 0.2–1% of the population, or 48,000 to 250,000 Australians. A 2020 meta-analysis put worldwide prevalence at roughly 0.4–0.7%, which means tens of millions of people. Long COVID has added many more. Most people with ME/CFS are thought to be undiagnosed.
What supplements help ME/CFS?
Evidence is modest. CoQ10 combined with NADH showed small benefits in randomised trials, and oxaloacetate has one positive randomised trial. Creatine and acetyl-L-carnitine have weaker evidence. Supplements may raise the threshold before a crash but don't treat the underlying illness. Discuss any supplement with your doctor.
Can I get the NDIS or the Disability Support Pension for ME/CFS?
Both are possible but neither is automatic. ME/CFS is named in the Disability Support Pension's Impairment Tables (Table 1, physical exertion and stamina, and Table 7, brain function), and the descriptors are built around post-exertional malaise; you need 20 points, a condition that is 'diagnosed, treated and stabilised', and to be unable to work 15 hours a week. The NDIS assesses functional impact case by case, and the law says fluctuating conditions can still be permanent. Strong medical evidence describing your worst days is the key to both.
Can children get ME/CFS?
Yes. ME/CFS affects roughly 1 in 200 children and teenagers, most often starting between ages 11 and 19 and frequently after glandular fever. Young people usually want to go to school but physically can't, so it's often mistaken for school refusal or anxiety. The outlook is better than in adults: in a long-term Melbourne study, 38% reported recovery by 5 years and 68% by 10 years.
What is severe ME/CFS?
About one in four people with ME/CFS are housebound or bedbound at some point. People with severe ME/CFS can do only minimal tasks for themselves and are often extremely sensitive to light and sound. People with very severe ME/CFS are in bed all day, need help with eating and personal care, and some cannot swallow and need tube feeding. Care should aim to reduce stimulation and stabilise, not to activate, and hospital admission should be avoided where possible.