Treatment

Treatments for myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) aim to help relieve your symptoms.

Your treatment will be tailored to your symptoms.

You may find there are times when your symptoms get better, as well as times when your symptoms are more severe.

Treatment plans for ME/CFS

There's no single way of managing ME/CFS that works for everyone, but there are a number of treatment options.

The National Institute for Health and Care Excellence (NICE) says you should be offered a treatment plan tailored to your symptoms.

Your doctor should discuss all of the options with you and explain the benefits and risks of any treatment.

They should work with you to develop a treatment plan that suits you and takes into account your circumstances and preferences.

You may need advice about making lifestyle changes, specialist treatments, or a combination of both.

If your symptoms are severe, your doctor should ask a specialist for advice.

Your treatment plan should be reviewed regularly.

Specialist treatments

There are a number of specialist treatments for ME/CFS.

Energy management

Energy management is a treatment that aims to teach you how to make best use of your energy levels in your day-to-day life, without making your symptoms worse.

As part of this treatment you may be asked to monitor your daily activities using a diary or apps on your phone.

Some people with ME/CFS have found that exercise programmes can make their symptoms better. But some also found it made no difference or actually made symptoms worse.

If you think you would benefit from increased levels of exercise you should be offered a personalised plan with support from a healthcare professional (such as a physiotherapist) with experience in working with people with ME/CFS.

Graded exercise therapy (GET), which aims to gradually increase physical activity levels, is not recommended for people with ME/CFS.

Cognitive behavioural therapy (CBT)

Your doctor may discuss with you whether cognitive behavioural therapy (CBT) is a suitable option. CBT is a type of talking therapy that aims to help people manage ME/CFS by looking at different ways of thinking about having a long-term condition.

CBT aims to help you live with your symptoms. It does not directly treat the symptoms of ME/CFS.

If you choose to try CBT it’s important your therapist has specific training and experience in treating people with ME/CFS.

Medicine

There's no specific medicine for treating ME/CFS, but medicine can be used to relieve some of the symptoms.

Painkillers you buy from a pharmacy or supermarket can help ease headaches, as well as muscle and joint pain. A GP can prescribe stronger painkillers, although they should only be used on a short-term basis.

You may be referred to a pain management clinic if you have long-term pain.

Antidepressants can be useful for people with ME/CFS who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed to help ease muscle pain.

Lifestyle changes

As well as specialist treatments for ME/CFS, making lifestyle changes can also help.

Diet and supplements

It's important you eat regularly and have a healthy, balanced diet. You should be offered practical advice about how to achieve this if, for example, your ME/CFS symptoms are making it difficult for you to shop or prepare food.

Some people with severe ME/CFS may be at risk of malnutrition, due to loss of appetite and difficulties chewing and swallowing.

You may be referred to a dietitian who has experience of working with people with ME/CFS.

Diets that exclude certain food types are not recommended for people with ME/CFS. There's also insufficient evidence to recommend supplements, such as vitamin B12, vitamin C, magnesium, or co-enzyme Q10.

Sleep, rest and relaxation

You may have sleep problems that make your ME/CFS symptoms worse. For example, you may:

• have problems getting to sleep
• have unrefreshing or restless sleep
• need an excessive amount of sleep
• sleep during the day and be awake at night

You should be given advice about how to establish a normal sleeping pattern. Having too much sleep does not usually improve the symptoms of ME/CFS, and sleeping during the day can stop you sleeping at night.

You should change your sleep pattern gradually, and your doctor should review how it's going regularly. If your sleep does not improve after making changes, you may have an underlying sleep problem that will need to be addressed.

It's likely you'll need to rest during the day, and your doctor should advise you about the best way to do this. For example, they may suggest limiting each rest period to 30 minutes and teach you relaxation techniques, such as breathing exercises.

If you have severe ME/CFS and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. These problems, and how to avoid them, should be explained to you and your carers.

Equipment

There may be equipment you can use to help with daily living, such as a wheelchair or a stairlift. You may also be eligible for support with your care and day-to-day living.

Further information:

• Care and support you can get for free
• Household gadgets and equipment to make life easier

There's limited or no evidence to recommend:

• resting completely – there's no evidence this helps
• complementary medicine – there's not enough evidence that it's helpful for ME/CFS

You should not take up vigorous unsupervised exercise, such as going to the gym or for a run as this may make your symptoms worse.

Setbacks or relapses

A setback or relapse is when your symptoms get worse for a period of time.

They're a common part of ME/CFS and can be caused by a number of factors, such as an infection or an unplanned activity. Sometimes there's no clear cause.

The doctors treating you can help you manage a setback or relapse by:

• including more breaks with your current levels of activities
• teaching you relaxation and breathing techniques
• encouraging you to be optimistic about your recovery