Around 400,000 people in the UK are affected by myalgic encephalomyelitis (ME). While we can all feel tired and worn out from time to time, people with ME experience a debilitating fatigue that can’t be cured with rest. This can make even basic activities – from sleep and work, to eating and drinking – feel overwhelming.
One of the most frustrating aspects of ME is the lack of diagnostic tests, leaving many patients feeling dismissed and misunderstood. However, there’s reason for optimism, as researchers are investigating whether a simple blood test could identify the condition through specific biomarkers.
While targeted drug treatments are still being discussed and assessed, effective management strategies can also be used to help people with ME find ways to improve their quality of life and regain some control. So, if you’re struggling, try to remember that you’re not alone and there is hope.
Here, we’ll take a closer look at ME, including causes, symptoms, and ways to cope.
What is myalgic encephalomyelitis (ME)?
Myalgic encephalomyelitis (ME) is a complex condition that affects both the nervous and immune systems, leaving the body feeling exhausted and unable to recover from even minor exertions.
Research shows that people with ME are less able to use glucose for energy production, which may be the underlying cause of muscle fatigue – a key symptom. In severe cases, even simple tasks, such as showering or brushing teeth, can feel unmanageable.
Many people with ME also experience brain fog, where they struggle to find words, remember simple things, or make basic decisions. This can be just as challenging as the physical symptoms, fundamentally changing how someone moves through the world.
What are the symptoms of ME?
NICE guidelines identify several core symptoms of ME, which are…
- Debilitating fatigue that worsens after activity; isn’t caused by overdoing things physically or mentally; and doesn’t improve after rest.
- Post-exertional malaise (PEM) – a worsening of symptoms after activity that often doesn’t start until hours or days later, is much worse than the activity would normally cause, and takes an unusually long time to recover from (hours, days, weeks, or longer).
- Unrefreshing sleep and/or sleep problems, which may include light sleep; sleeping excessively; changes to sleep patterns; waking up feeling exhausted, achy, and flu-like; and frequently waking during the night.
- Cognitive difficulties, often called “brain fog”, may include trouble finding the right words or numbers, difficulty speaking, slower thinking and responses, short-term memory problems, and trouble concentrating or multitasking.
Not everyone with ME experiences the same symptoms or to the same severity. Some people find aches and pains most disabling, while others are most affected by cognitive issues. People with mild ME may manage light domestic tasks, such as cooking, while those with more severe symptoms may need support with basic functions, like eating, due to difficulty chewing and swallowing.
According to the ME Association, of the 400,000 people living with ME in the UK, around 25% experience a severe form at some point in their lives, which may leave them housebound, wheelchair-bound, or bedbound for extended periods. In this case, specialist care becomes essential.
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What can cause ME, and what are the risk factors?
The cause of ME is currently unknown. However, research has identified several factors that may trigger or perpetuate it.
Factors that may make you more susceptible
- Family history – ME appears to run in some families
- Being female – women are two to four times more likely to be diagnosed with ME than men
- Age – ME most commonly develops in people in their mid-20s to mid-40s
Events that may trigger ME
- Infections, especially viral ones like glandular fever or Long Covid
- Other immune system stressors, such as vaccinations, trauma, or pregnancy
- High levels of physical or mental stress – being under significant stress during an acute infection may increase the likelihood of developing ME
Factors that keep ME going
- Problems with energy production in cells (mitochondrial dysfunction) – causing muscle fatigue
- Immune system problems – the immune system may remain constantly activated, as if continuously fighting off threats
- Problems with automatic body functions – difficulty regulating things the body normally controls automatically, like heart rate and digestion
- Disrupted stress response system (hypothalamic-pituitary-adrenal (HPA) axis dysfunction) and low cortisol levels – making it more difficult for the body to cope with stress
A note on the role of stress
According to the ME Association, a person under considerable mental or physical stress when they develop an acute infection may be more likely to develop ME.
This might include someone who contracts a viral infection but continues with normal work or family responsibilities without proper rest and recovery, or someone maintaining an intense exercise routine while fighting off an infection.
Once diagnosed with ME, the stress of living with the condition can become a factor in perpetuating the illness, too, which is why stress management is often included in treatment and coping strategies.
Long Covid and ME – what’s the link?
The COVID-19 pandemic has drawn new attention to illnesses that linger after viral infections. Many people with persistent symptoms after COVID-19 are facing similar challenges to those with ME, leading researchers to look closer at how these conditions might be connected.
The World Health Organization (WHO) defines Long Covid as symptoms that continue or develop three months after a COVID-19 infection, last for at least two months, and can’t be explained by anything else. Like ME, Long Covid is increasingly being recognised as an ‘acute post-viral syndrome’.
While more research is needed to understand whether the same processes are happening in both conditions, ME and Long Covid already share many similarities
- Both seem to happen when the body doesn’t fully recover from a viral infection
- Symptoms come and go, varying in how severe they are from day to day
- Both are more common in women than in men
- Both are difficult to diagnose because there’s no single definitive test
- Unfortunately, there are currently no proven drug treatments for either condition
Many people with Long Covid have a cluster of symptoms that match an ME diagnosis, with debilitating fatigue often being the main issue. Both conditions also involve post-exertional malaise, where symptoms get significantly worse 12-48 hours after even minor physical or mental activity.
Other common symptoms in both conditions include…
Brain and nervous system
- Brain fog
- Dizziness
- Problems with memory and concentration
Physical
- Muscle aches and pains
- Sleep that doesn’t refresh you
- Feeling flu-like
Other
- Nausea
- Changes in bathroom habits (including needing to urinate more often)
- Difficulty regulating body temperature
You can read more about how Long Covid and ME symptoms overlap in this leaflet from the ME Association.
Long Covid treatment currently focuses on symptom management. Recent research suggests low-dose naltrexone may help improve symptoms of both Long Covid and ME, with studies now underway to determine if it could become an NHS treatment option.
The impact of ME on mental health
Given its profound impact on daily life, it’s unsurprising that some people living with ME develop issues with their emotional and mental health. Social isolation, physical limitations, a lack of understanding around the condition, and debilitating fatigue all contribute to this challenge.
The lack of awareness around ME can be particularly difficult, as people often find themselves having to explain that they aren’t just tired – they’re living with a recognised medical condition that significantly affects every aspect of their daily life
How is ME diagnosed?
If you suspect you may have ME, it’s important not to struggle in silence and to speak to your GP. While there aren’t any specific tests for ME, clear guidelines are available to help doctors make an accurate diagnosis.
Your GP should also ask you about your medical history and carry out a physical examination.
Because symptoms of ME can overlap with many other common physical conditions, such as sleep apnoea, MS, hepatitis C, and hypothyroidism, these will often need to be ruled out using the relevant tests before ME is diagnosed.
However, your GP should be able to offer advice on managing symptoms while the diagnostic process is ongoing.
You can find out more about how ME is diagnosed on the NICE guideline website.
How is ME managed?
While there’s currently no cure for ME, there are self-help strategies and medicines available that can help people cope with and manage their symptoms.
The best approach usually involves a combination of support and guidance from different health professionals, along with learning about self-help strategies that work for you.
According to NICE, you should be offered a personalised care and management plan.
We’ll cover some of the main management options for ME below.
Cognitive behavioural therapy (CBT)
According to NICE guidelines, “Cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME. However, it should only be offered to support people who live with ME to manage their symptoms, improve their functioning, and reduce the distress associated with having a chronic illness.”
Talking therapies, like CBT, are available on the NHS, and your GP should be able to refer you. Or, you can refer yourself, if preferred.
Medicine
Most people report that over-the-counter painkillers have little or no effect on muscle, joint or nerve pain.
However, according to the ME Association, a low dose of a sedating tricyclic (prescription) drug, such as amitriptyline, may help with pain and sleep disturbance.
You can read more about amitriptyline in this ME Association leaflet.
Note: While there are currently no drug treatments available for ME on the NHS, recent research has provided some hope. Scientists at Griffith University found that low-dose naltrexone (LDN) – a medication typically used to treat opioid addiction – may help some people with ME. In a 2025 study, LDN was found to help restore how cells function properly.
However, researchers are still testing whether the drug is safe and effective as a treatment for ME or Long Covid. This means that while LDN is available in the UK from some private doctors and pharmacies, it isn’t yet recommended in NICE guidelines or widely available through the NHS.
Energy management (or pacing)
Energy management, also called pacing, is a strategy designed to help people manage their energy levels in daily life, without making symptoms worse.
It involves using methods like dividing activities into smaller tasks with rest breaks in between, and recording and monitoring activities and energy levels in a diary or app on your phone, such as Visible: Pacing for illness.
There are also theories available to help with pace planning, such as Spoon Theory, used within the NHS. It was created by Christine Miserandino, who has lupus, to explain how she manages her energy levels while living with ME.
Spoon theory is based on the idea that you start the day with 12 spoons of energy, and different tasks may use up more spoons of energy than others.
For example, brushing your teeth may use up one spoon, while going to the shops may use up six spoons. The energy used for each activity can vary from person to person, but the idea is to avoid exceeding 12 spoons. Healthy people have more spoons than someone with ME, so it’s a way to help people living with the condition to stay within more manageable limits.
While NICE guidelines recognise that energy management isn’t curative for ME, it’s thought to “help people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.”
You can read more about pacing in this ME Association leaflet.
Note: Graded exercise therapy (GET) – which aims to gradually increase physical activity levels – was recommended as a management strategy for ME in the 2007 NICE guidelines. However, this was based on a flawed scientific theory.
After reviewing all the research evidence and clinical trials for GET, the NICE guideline committee concluded that there was evidence of significant harm from GET for people with ME. It’s, therefore, no longer recommended for ME management by NICE and health professionals shouldn’t be prescribing it.
5 lifestyle changes that can help manage ME
Alongside professional treatment, lifestyle adjustments can also help manage ME symptoms. We’ll explore some ideas below.
1. Prioritise sleep
Consistent sleep is a core part of pacing strategies. While sleep often isn’t refreshing for people with ME, it still provides the only real opportunity for the body to attempt to restore some energy.
In the early stages of the ME, some people may need excessive sleep (hypersomnia), sometimes 12 hours or more. But, as the illness becomes more chronic, other types of sleep disturbances, such as trouble falling or staying asleep, are common. This may be accompanied by cramps, ‘restless legs’, vivid dreams, and waking early in the morning.
According to the ME Association, if you’ve been diagnosed with ME, self-help measures may improve sleep quality and depth, such as taking warm baths before bed and avoiding caffeine, alcohol, and chocolate for six hours before sleep.
Any significant sleep disturbance is also important to discuss with your GP, as ME can be misdiagnosed as sleep apnea or narcolepsy – conditions which are managed differently.
You can find out more about ME and sleep disturbances in this ME Association leaflet. This also includes information about over-the-counter remedies and prescription-only drugs, which your GP should be able to discuss with you if self-management strategies aren’t working.
2. Consider whether workplace changes could help
Because of its impact on daily life, some people with ME need to take time off work. This can feel daunting to navigate, and, for some people, can cause stress and anxiety. For example, you may worry about how the condition will affect your performance or what people think.
However, it’s important to note that ME is a condition covered by the 2010 Equality Act and, by law, your employer has to make reasonable adjustments to help you do your job. So, if you’re worried about your symptoms affecting your ability to work, it’s worth speaking to your employer.
The ME Association has a guide to employment issues if you’d like further support.
3. Make positive changes to your diet
While it might seem obvious, there’s evidence that healthy eating can have a positive impact on ME symptoms.
Research shows that people with ME may be at risk of malnutrition due to loss of appetite or difficulties with food shopping and preparing food. Being housebound, if ME symptoms are severe, can also increase the risk of vitamin D deficiency.
As a result, according to the NHS, if you have ME, you should be offered practical advice on how to get all the nutrients you need. For example, your GP may refer you to a dietitian who has experience working with ME, and should be able to advise you on the suitability of taking certain supplements, such as vitamin D.
For general tips and guidance on how to improve your diet, head over to our diet and nutrition section. You’ll also find plenty of help and ideas for eating well with ME in this booklet from the ME Association.
4. Create a support network
Because of its impact on daily life, if you have ME, it’s important to feel supported. Simply having the space to share how you’re feeling can make all the difference and remind you that you’re not alone.
Some people find that connecting with others who have shared experiences of ME is particularly valuable. Organisations like Action for ME and ME Association are great places to seek support and guidance, each offering practical assistance, peer-to-peer support forums, and a helpline.
5. Be kind to yourself and explore ways to keep stress at bay
Living with a long-term health condition like ME can be challenging and take its toll on your physical and mental health. So, it’s important to practise self-care, prioritise mental wellbeing, and take things at your own pace.
Because stress is often a key component of ME and can perpetuate the condition, it can be useful to explore ways to keep it at bay.
Although this may be easier said than done, some people find things like mindfulness, journaling, and breathing exercises useful for managing stress levels. You might also want to read our articles: Fact vs fiction – the truth about stress and 9 simple stress-relieving activities.
Worried about accessing the NHS care you need?
83% of Rest Less members are worried about accessing the healthcare they need on the NHS#, making fast access to treatment more important than ever.
HMCA private medical cover offers affordable, flexible plans, with 90% of members saving money when they switch. Enjoy peace of mind. Join today and get £150 off your subscription.
#Data from over 1,000 Rest Less members surveyed in 2025
^Data from HMCA members who joined between 01/01/25 and 30/06/25
Final thoughts...
Living with ME can be debilitating and significantly impact quality of life. While there’s currently no cure, it’s important to remember that you’re not alone and there are options available to help you manage symptoms.
The most important thing is to be kind to yourself, prioritise rest, and take things at a pace that’s right for you.
For further reading, head over to our health section.
Do you have any experience with ME that you’d like to share? We’d be interested to hear from you in the comments below.
* Links with an * by them are affiliate links which help Rest Less stay free to use as they can result in a payment or benefit to us. You can read more on how we make money here.
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