Treatments for myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) aim to help relieve your symptoms.
Your treatment will be tailored to your symptoms. Early diagnosis, taking medicine to control certain symptoms, and making lifestyle changes can all help.
ME/CFS can last a long time, but most people's symptoms will improve with time.
Some people make a full recovery and can return to their previous activities. Others continue to have symptoms or periods when their symptoms get worse.
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.
There are a number of specialist treatments for ME/CFS.
Cognitive behavioural therapy (CBT)
If you have mild or moderate ME/CFS, you should be offered cognitive behavioural therapy (CBT).
CBT is a talking treatment that can help you manage ME/CFS by changing the way you think and behave.
Your CBT therapist will ideally have experience of dealing with ME/CFS and treatment will be offered on a 1-to-1 basis.
Using CBT does not mean ME/CFS is considered to be a psychological condition. It's used to help people with a variety of long-term conditions.
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.
An exercise plan may be suitable for some people living with CFS /ME, but exercise programmes such as graded exercise therapy (GET) are no longer recommended for everyone with ME/CFS.
If you think you would benefit from increased levels of exercise you should be offered a personalised plan with support from a health professional (such as a physiotherapist) with experience in working with people with ME/CFS.
There's no specific medicine for treating ME/CFS, but medicine can be used to relieve some of the symptoms.
Over-the-counter painkillers 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.
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.
If you feel sick, eating starchy foods, eating little and often, and sipping drinks slowly may help. If this does not work, medicine can be prescribed.
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.
Other lifestyle changes to manage ME/CFS
Other ways to manage ME/CFS include:
- equipment – some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home
- changes in your place of work or study – when you're ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return
There's limited or no evidence to recommend:
- resting completely – there's no evidence this helps
- complementary medicine – there is 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.
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