We are currently under development. Please don't submit any requests at this point in time. The site goes live on 1 November 2026.

Registered charity to be confirmed

Text size
The Beyond Pain Foundation

Conditions we support

Conditions guide

ME/CFS

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term illness. Its key feature is that activity, even small amounts, can make symptoms much worse for days or weeks. Many people also have muscle and joint pain. This guide explains the symptoms, how it is diagnosed, what the NHS should and shouldn't offer, and your rights at work.

Estimated people with ME in the UK
About 404,000
Women compared with men
About 3 to 4 times more often diagnosed
Crash after activity can start
12 to 48 hours later
Diagnosis can be made after
3 months of symptoms

This guide is general information, not medical advice. Medicines and treatments must be prescribed or recommended for you by a doctor or pharmacist. We do not give doses here.

What ME/CFS is

ME/CFS is a long-term illness that affects many parts of the body, including the nervous and immune systems. It is not the same as everyday tiredness, and it does not get better with rest alone.

The cause is not yet known. For many people it starts after an infection, such as a virus. It can affect anyone, including children, but women are diagnosed far more often than men. A recent UK study estimated about 404,000 people in the UK have ME, though many are thought to be undiagnosed.

There is no cure yet. But the right support, especially learning to manage your energy, can help you stay as well as possible and avoid getting worse.

The NHS updated its approach in 2021. The NICE guideline (NG206) now says that exercise programmes which push you to do a bit more each time must not be offered, because they can make people worse.

Levels of severity

NICE describes four levels. Your level can change over time, and it is common to move between them.

Mild

You can look after yourself and do light housework, though it may be hard. You may still be working or studying, often by giving up hobbies and social life to cope. Days off are common.

Moderate

Moving around and daily tasks are reduced. Most people have stopped work or education. Rest in the afternoon is often needed, and sleep is usually poor.

Severe

You can only do minimal daily tasks, such as washing your face. You may use a wheelchair, rarely leave the house, and be very sensitive to light and sound. Thinking is badly affected.

Very severe

You are in bed all day and need help with personal care, eating and drinking. Some people need tube feeding. Light and sound can be unbearable.

Symptoms and crashes

NICE says four main symptoms must all be present:

  • Debilitating fatigue that is made worse by activity and not properly relieved by rest
  • Post-exertional malaise (PEM): symptoms getting worse after physical, mental or emotional effort
  • Unrefreshing sleep or sleep problems, such as waking feeling exhausted or flu-like
  • Cognitive difficulties ("brain fog"): trouble finding words, concentrating, or thinking quickly

Many people also have muscle and joint pain, headaches, a sore throat, dizziness or feeling faint when standing, palpitations, and sensitivity to light, sound, smells or some foods and medicines.

How a crash (PEM) unfolds

  1. The trigger

    Overdoing it

    Activity beyond your energy limit. It can be physical, like a shower or a walk, or mental, like a meeting or a busy shop.

  2. 12 to 48 hours later

    The delay

    You may feel fine at first. Symptoms often worsen hours or a day or two afterwards, so the link is easy to miss.

  3. Days to weeks

    The crash

    Much worse fatigue, pain, fog and flu-like feelings. Even small tasks may be impossible.

  4. Days, weeks or longer

    Recovery or relapse

    Slow return towards your usual level. Repeated crashes can lead to a longer relapse.

The 12 to 48 hour delay comes from the NICE guideline. Everyone's pattern is a little different.

Avoiding boom and bust

On a better day it is tempting to catch up on everything. In ME/CFS this often triggers a crash. Staying inside your energy limit, even on good days, is the most important way to protect your health.

When to get urgent help

New symptoms should never just be put down to ME/CFS. Get them checked.

Call 999 or go to A&E if you have

  • chest pain or sudden, severe breathlessness
  • you faint and don't come round quickly, or injure yourself
  • sudden weakness on one side, or trouble speaking
  • you can't keep any fluids down and are very drowsy
  • thoughts of ending your life and feel you may act on them

Call NHS 111 if

  • you are struggling to eat or drink enough
  • you have a high temperature or new symptoms that worry you
  • you are in a mental health crisis. In England, call 111 and choose the mental health option (option 2)

See your GP if

  • you have had unexplained exhaustion and other symptoms for 6 weeks or more
  • you are getting worse, or crashes are more frequent
  • you often feel dizzy or faint when standing
  • you are losing weight or have new pain

Long illness can be isolating. If you are struggling, you can talk to Samaritans any time, day or night, free on 116 123. If you are severely affected and need a hospital stay, NICE says your care should be adapted, for example a quiet single room and help with eating.

Diagnosis and referral

There is no single test for ME/CFS. Your GP will ask about your symptoms and history, examine you, and arrange blood and urine tests to rule out other causes such as anaemia, thyroid problems or kidney problems.

  1. Suspected ME/CFS

    After 6 weeks in adults, 4 weeks in children

    If you have all four main symptoms, NICE says your GP should suspect ME/CFS. They should give you advice on managing symptoms straight away, including resting and not using more energy than you have. You should not be told to exercise more.

  2. Diagnosis

    After 3 months

    If symptoms have lasted 3 months, are not explained by another condition, and have reduced what you can do, ME/CFS can be diagnosed.

  3. Specialist ME/CFS team

    Referral to confirm the diagnosis and plan care

    NICE says people with suspected ME/CFS should be referred to a specialist ME/CFS team to confirm the diagnosis and make a personal care and support plan. Services vary a lot across the UK, and some areas have no specialist service.

Treatments and medicines

There is no treatment that cures ME/CFS. Care aims to ease symptoms, protect you from crashes and help you live as well as possible.

Energy management

Specialist ME/CFS team, GP or occupational therapist

The main approach. You learn your energy limit and plan activity and rest to stay inside it. It covers physical, mental and emotional energy. It takes time to find your limit, often several weeks of tracking.

Physical activity, only with a specialist

Specialist ME/CFS physiotherapist only

If you want to, a physiotherapist from an ME/CFS team can help you find a stable baseline first, then make very small changes at your pace. Activity should only increase if your symptoms allow, and should reduce after a setback.

Symptom medicines

Pharmacy or prescription

There is no medicine for ME/CFS itself. Painkillers from a pharmacy, or prescribed medicines for pain or sleep, may help some symptoms. The NHS says a low dose of amitriptyline may help muscle pain and sleep. People with ME/CFS can be more sensitive to medicines, so doctors often start low and go slow.

CBT

Only from a therapist trained in ME/CFS

CBT may help you cope with living with a long-term illness and the distress it causes. NICE is clear it is not a cure and does not treat the illness itself. It should only be offered if you want it.

Help with dizziness, sleep and diet

GP, specialist team or dietitian

Advice on feeling faint when standing (orthostatic intolerance), a sleep routine that suits you, and eating well. Some people need a referral to a heart specialist for dizziness on standing.

What NICE says must not be offered

  • Graded exercise therapy (GET), or any programme that increases activity by fixed amounts. It can make people worse.
  • General exercise programmes made for healthy people or other conditions.
  • Advice to "just go to the gym" or exercise more without specialist support.
  • The Lightning Process, or therapies based on it.
  • Any medicine or supplement sold as a cure for ME/CFS.

If you are offered any of these, you can say no and show your GP the NICE guideline.

Specialist options

NHS specialist ME/CFS services are usually run by a team that may include doctors, occupational therapists, physiotherapists, psychologists and dietitians. Your GP needs to refer you. Some services offer phone or video appointments, and NICE says severely affected people should be offered home visits.

Not every area has a service, and waits vary. In 2025 the government published a delivery plan for ME/CFS, which includes work on NHS service standards and better training for staff. Ask your GP what is available near you. Action for ME and the ME Association can also help you find services.

Energy management and living well

Managing your energy

  • Keep an activity and symptom diary to find your limit
  • Break tasks into small chunks, with rest before you need it
  • Rest properly: lie down somewhere quiet, without screens
  • Count thinking, talking and screen time as activity too
  • Use a heart rate monitor if it helps you stay within limits
  • Use aids such as a shower stool or wheelchair to save energy

Sleep and wellbeing

  • Keep a regular sleep routine, changing it slowly if needed
  • Avoid long naps late in the day if they stop you sleeping at night
  • Eat regularly and drink enough, especially if dizzy
  • Ask for help with tasks that cost too much energy
  • Stay connected in ways that suit you, such as online groups

Getting the best care

Tips for appointments

  • Ask for a phone or video appointment if travelling would cause a crash
  • Bring a short written list of symptoms, how long you have had them and what you can no longer do
  • Describe the delayed crash clearly: what you did, and how bad you were 1 to 2 days later
  • Ask: "Could this be ME/CFS under the NICE 2021 guideline?" and "Can you refer me to a specialist ME/CFS team?"
  • Bring someone to take notes and help explain
  • If you're offered graded exercise, explain that NICE says it should not be offered
  • You can ask to see another GP or for a second opinion

ME/CFS and work

ME/CFS can count as a disability under the Equality Act 2010 (the Disability Discrimination Act in Northern Ireland). This applies if it has more than a minor effect on your daily life and has lasted, or is likely to last, at least 12 months. Conditions that go up and down can count.

If so, your employer must make reasonable adjustments. NICE also says employers and occupational health should help people with ME/CFS with flexible working. Adjustments might include:

  • Fewer or shorter working hours
  • Working from home
  • Flexible start times to avoid rush hour
  • Rest breaks and a place to lie down
  • A slow, flexible return after absence
  • Fewer meetings, or cameras off on calls
  • A quiet desk with low lighting
  • Written tasks and reminders for brain fog

Equipment that saves energy can help. Examples include a supportive, reclining or ergonomic chair, a sit-stand desk with a stool, a laptop stand, voice recognition software, noise-cancelling headphones, and a footrest. If you are working from home, the same equipment can help there.

Access to Work is a government grant that can pay for equipment, support workers and taxis to work if you can't use public transport. For advice on your rights, contact Acas or Citizens Advice.

Benefits

If you can't work, you may get Statutory Sick Pay from your employer for up to 28 weeks. You may also be able to get Personal Independence Payment (PIP), or Adult Disability Payment in Scotland, whether or not you work. Universal Credit or Employment and Support Allowance may also help. Describe your worst days and the crashes that follow activity, not just a good day. The ME Association and Turn2us can help you check what you can claim.

How The Beyond Pain Foundation can help

If NHS waits are too long, or the help you need isn't available to you on the NHS, we may be able to fund:

  • A private consultation with a doctor experienced in ME/CFS
  • An occupational therapy assessment for work or home, focused on saving energy
  • A heart rate monitor to help with energy management
  • Mobility aids, such as a wheelchair or perching stool
  • Workplace or home equipment, such as a supportive chair, sit-stand desk or voice software

We fund treatment and equipment, not everyday living costs such as rent or bills. Treatment must be from a registered or qualified practitioner, and we won't fund treatments NICE says must not be offered, such as graded exercise therapy. Always get a written quote to include with your application.

Apply for funding Check the requirements

Support and sources

The ME Association

Charity and ME Connect helpline

Freephone 0808 801 0484. Information, leaflets and support for people with ME/CFS and long COVID.

meassociation.org.uk

Action for ME

Charity and support service

Information and support for adults, children and families. Call 0117 927 9551 or use the online forum.

actionforme.org.uk
Sources for this guide

Last reviewed: October 2026.