Chronic fatigue syndrome (myalgic encephalomyelitis) – how to manage it

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is a long-term condition that causes extreme fatigue, alongside other symptoms.

Feeling very tired all the time doesn’t get across just how overwhelming living with CFS/ME can be. For some people, it leaves them so exhausted that no amount of rest helps.

It’s often referred to as an “invisible illness,” meaning it can be hard for others to tell that you have the condition.

Most cases are mild or moderate, but for 1 in 4 people, symptoms are severe. While there’s currently no cure, certain treatments can help you manage things.

What are the symptoms?

CFS/ME symptoms can come and go. You may feel better for a period of time, and then worse – this is known as a relapse or a setback, which may be caused by trying to do too much, stress, an illness, or nothing in particular.

If you’re a woman, or an assigned female at birth (AFAB), you may notice your symptoms get worse at certain points in your menstrual cycle.

The main symptoms of CFS/ME are:

• extreme fatigue – often described as “a different kind of tiredness,” it’s nothing like regular sleepiness, and it doesn’t go away with rest or sleep
• sleeping problems – “feeling constantly tired but wired” means CFS/ME can make you wake up from sleep not feeling refreshed, wake during the night, feel stiff, and feel tired during the day
• memory problems – also known as brain fog. It means you might have difficulty remembering certain words, names, numbers, things that happened, and struggle to focus on one thing at a time. Your reactions may also be slower
• tiredness after activity – this is when all other symptoms get worse after you've done mental or physical activity, such as socializing, exercising, studying, or working. Known as post-exertional malaise (PEM), this can come on hours or days after the activity itself, and it can take you weeks to recover.

CFS/ME may also cause:

• pain in muscles or joints, or muscle twitches or spasms
• a sore throat and swollen glands
• flu-like symptoms
• feeling dizzy or sick, or fainting when standing up from a lying position
• headaches
• loss of appetite
• fast or irregular heartbeats (heart palpitations)
• intolerance to alcohol, certain foods, or chemicals
• sensitivity to light, sound, touch, taste, and smell
• having hot flashes, or cold chills, when the temperature changes
• low mood, depression, or anxiety if you’re struggling to cope with your symptoms.

Everyone experiences their condition differently. It’s important to get new symptoms checked out by a doctor as they may not be related to CFS/ME.

Types of CFS/ME

How bad your symptoms are depends on how serious your condition is.

CFS/ME symptoms can be grouped as:

• mild – when you can care for yourself but your movements may be limited. You might be able to go to work or school, but not have the energy for anything else, for example
• moderate – it’s hard for you to move around easily and go about your daily activities, such as working or studying, and you might need to rest often. You may also have problems sleeping
• severe – you may be bed-bound or need a wheelchair to get around. You might not be able to do any activities and can only complete basic tasks. You may also find it hard to concentrate, be sensitive to noise and light, and it may take you time to recover after going out somewhere, for example
• very severe – you spend all your time in bed resting and are dependent on carers to eat. You need to be fed using a tube because it’s hard to swallow, need help washing yourself and going to the toilet. You may also be extremely sensitive to light and noise.

What causes CFS/ME and who’s affected?

There’s no known cause for the condition and it seems anyone can get it, whether you’re an adult or a child.

But you may be more likely to develop CFS/ME if:

• you’re a young to middle-aged adult – CFS/ME is most common in this age group
• you have a close family member with the condition – it seems to run in families
• you’ve had an infection – some people develop it after recovering from a viral or bacterial infection
• you’ve gone through physical or emotional trauma – some people experience an injury, go through major surgery, or are dealing with lots of emotional stress just before their symptoms begin
• your body struggles to use energy properly – some people with CFS/ME have problems converting their body's fuel (fats and sugars) into energy
• you have other medical conditions – such as fibromyalgia or postural orthostatic tachycardia syndrome (POTS).

When to see your doctor and getting diagnosed

Get an appointment with a doctor if you have an excessive or constant feeling of tiredness.

You’ll be asked about your medical history and your symptoms, including how often you get symptoms, how long they've lasted, and how bad they are. You also may have a physical exam.

You’ll probably have blood tests or urine tests too – these can help rule out other conditions like anemia, underactive thyroid, diabetes, or liver and kidney problems.

Many other medical problems share some of the same signs, so CFS/ME can take a while to be diagnosed.

The set criteria a doctor uses may vary slightly depending on where you live, but CFS/ME is usually diagnosed if you have:

• extreme fatigue (tiredness)
• sleep issues
• problems with your memory, thinking, and concentration
• your symptoms get worse with physical or mental stress.

Self-care tips

There’s no cure for CFS/ME, so managing your symptoms at home is key in dealing with the condition.

This might include:

• eating healthy foods – it’s important to eat regularly and have a balanced, varied diet. Diets based on excluding certain food groups aren’t generally recommended for people with ME/CFS, and there’s not enough evidence to recommend particular supplements either
• trying relaxation techniques – such as breathing exercises or meditation
• learning to manage your energy – work out how to make the best use of your energy without worsening your symptoms, and adapt your daily routine accordingly. A diary can be helpful for this. The idea of ‘pacing’ can also be useful, which means to maintain some level of activity, while resting enough, too
• taking over-the-counter medicine – such as painkillers for headaches, and muscle and joint pain.

How is CFS/ME treated?

If your symptoms are severe, you may also need medical help, such as:

• stronger painkillers prescribed by a doctor – only for short-term use
• antidepressants – useful if you’re in pain or having trouble sleeping. Amitriptyline is a low-dose antidepressant often prescribed for muscle pain
• referral to a pain management clinic – a specialist can help you with pain symptoms if you have severe CFS/ME
• seeing a dietician – helpful if you can’t prepare your own healthy food at home, or struggle to eat due to a lack of appetite, or issues with swallowing
• cognitive behavioural therapy (CBT) – CFS/ME can really affect your mental health and self-esteem. CBT can help you reframe the way you think about having a chronic condition, with the help of a licensed therapist.

Getting support

Having CFS/ME can feel frustrating, exhausting, upsetting, and overwhelming, especially if you’re constantly having to miss out on normal life activities.

Alongside support from your friends and family, connecting with like-minded people through support groups may help you cope with the condition, and feel less alone.

Try looking into:

• ME Association (UK)
• Action for ME (UK)
• Chronic Fatigue Support Group on Facebook
• International Association for Chronic Fatigue Syndrome
• American ME and CFS Society (US).