Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. 

CFS is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms (see box on this page).

Sometimes the term 'myalgic encephalopathy' is used. Encephalopathy means a condition that affects brain function.

CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

Who is affected

It is estimated that around 250,000 people in the UK have CFS. 

Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15. 

How it affects quality of life

Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe symptoms. These are defined as follows: 

• Mild: you are able to care for yourself, but may need days off work to rest.  
• Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and need to sleep in the afternoon. 
• Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but you have significantly reduced mobility. You may also have difficulty concentrating. 

Why it happens

It is not known exactly what causes CFS.

Various theories have been suggested, including:

• a viral infection 
• problems with the immune system 
• an imbalance of hormones 
• psychiatric problems, such as stress and emotional trauma 

Some people are thought to be more susceptible to the condition due to their genes, as the condition is more common in some families.

More research is needed to confirm exactly what causes the condition.

How it is diagnosed

There are specific guidelines issued by the National Institute for Health and Care Excellence (NICE) about the diagnosis and management of CFS.

NICE says that a diagnosis of CFS should be considered if you meet specific criteria regarding your fatigue (for example, it can't be explained by other conditions) and if you have other symptoms too, such as sleeping problems or problems thinking and concentrating.

The diagnosis can then be confirmed if these symptoms are experienced for several months.

How it is treated

There is no cure for CFS, so treatment aims to reduce the symptoms. Everyone with CFS responds to treatment differently, so your treatment plan will be tailored to you.

Some of the main treatments include:

• Cognitive behavioural therapy 
• a structured exercise programme called graded exercise therapy 
• medication to control pain, nausea and sleeping problems 

Treatments such as these can help improve CFS in most cases, although some people do not make a full recovery. It is also likely there will be periods when symptoms get better or worse.

Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure, no prescription drugs have been developed specifically for CFS, and symptoms can vary a lot over time. Thus, people with CFS should closely monitor their health and let their doctor know of any changes; and doctors should regularly monitor their patients' conditions and change treatment strategies as needed.

A team approach that involves doctors and patients is one key to successfully managing CFS. Patients and their doctors can work together to create an individualized treatment program that best meets the needs of the patient with CFS. This program should be based on a combination of therapies that address symptoms, coping techniques, and managing normal daily activities.

CFS affects patients in different ways, and the treatment plan should be tailored to address symptoms that are most disruptive or disabling for each patient. Helping the patient get relief from symptoms is the main goal of treatment. However, expecting a patient to return to usual activities should not be the immediate goal because the physical and mental exertion needed to try to reach that goal may aggravate the illness.

Because CFS is a complicated illness, its management may require input from a variety of medical professionals. Primary care providers can develop effective treatment plans based on their experience in treating other illnesses. Patients benefit when they can work in collaboration with a team of doctors and other health care professionals, who might also include rehabilitation specialists, mental health professionals, and physical or exercise therapists.

Difficulties 

Living with chronic fatigue syndrome can be difficult. Like other debilitating chronic illnesses, CFS can have a devastating impact on patients' daily lives and require them to make major lifestyle changes to adapt to many new limitations.

Common difficulties for CFS patients include problems coping with:

• the changing and unpredictable symptoms
• a decrease in stamina that interferes with activities of daily life
• memory and concentration problems that seriously hurt work or school performance
• loss of independence, livelihood, and economic security
• alterations in relationships with partners, family members, and friends
• worries about raising children

therapy

CBT aims to help reduce the severity of your symptoms and the distress associated with CFS. It works by breaking down overwhelming problems into smaller parts and by breaking the negative cycle of interconnected thoughts, feelings, physical sensations and actions.

Ideally, your CBT therapist will have experience in dealing with CFS and treatment will be offered on a one-to-one basis. The treatment will be tailored to your needs and may include some of the following:

• helping you to accept your diagnosis 
• challenging thoughts that could prevent your symptoms improving 
• trying to increase your sense of control over your symptoms 

The use of CBT does not mean CFS is considered to be a psychological condition. It is often used as a treatment for a variety of long-term conditions, such as cancer and rheumatoid arthritis 

Graded exercise therapy 

Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity. This will usually involve aerobic exercise (exercise that raises your heart rate) such as swimming or walking. You will have your own exercise programme adapted to your own physical capabilities.

GET should only be carried out by a trained specialist with experience in CFS and, if possible, should be offered on a one-to-one basis. After finding your 'baseline (what you can comfortably do already) in the exercise, you will gradually increase:

• the length of time that you do the exercise 
• the exercise intensity 

As part of your exercise programme, you and your therapist will set goals, such as being able to walk to the shops or carry out some gardening. It may take weeks, months or even years for you to achieve these goals, but it is very important that you do not exceed the exercise duration and intensity set for you. 

Activity management

Activity management is another aspect of your treatment programme that involves setting individual goals and gradually increasing your activity levels. You may be asked to keep a diary of your current activity and rest periods to establish your baseline. Activities can then be gradually increased in a way that you find manageable.

Medication

There is no medication available that can treat CFS specifically, but different medicines may be used to relieve some of the symptoms of the condition.

Over-the-counter painkillers can help ease any muscle pain, joint pain and headaches you may have. Stronger painkillers can also be prescribed by your GP, although they should only be used on a short-term basis. 

If you have chronic (long-term) pain, you may be referred to a pain management clinic. There are about 300 of these across the UK, mostly located in hospitals

If you experience severe nausea due to CFS, you may benefit from a type of medication called an anti-emetic.

Lifestyle advice

As well as these treatments, you may find the lifestyle advice below helpful.

Pacing

Pacing may be a useful way of controlling CFS symptoms. It involves balancing periods of activity with periods of rest.

Pacing means not overdoing it or pushing yourself beyond your limits. If you do, it could slow down your progress in the long term. Over time, you can gradually increase your periods of activity, while making sure they are balanced with periods of rest.

Learning how to make the most of your energy helps increase the amount that you can do. However, you may need to arrange your daily and weekly activities around when you can be active and when you need to rest.

If you pace your activities at a level that is right for you – rather than rushing to do as much as possible in a short space of time – you may be able to make steady progress.

However, it is important to note that there are some uncertainties about pacing. There is insufficient evidence on the benefits or harm of this treatment, although it is often recommended for CFS.

Other self-help techniques

The following recommendations may also help:

• avoid stressful situations 
• avoid alcohol, caffeine, sugar and sweeteners 
• avoid any food and drink that you are sensitive to 
• eat small, regular meals to help reduce any nausea 
• spend time relaxing 
• try not to sleep or nap excessively, as this does not help and may make any sleeping problems worse 

Relapses

A relapse is when your symptoms get worse for some time, leaving you unable to function at the level you previously managed.

Relapses are a common part of CFS and can be caused by a number of factors, such as an infection or an unplanned activity. Sometimes there is no clear cause. 

The healthcare professionals treating you can help you manage your 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 

Over time and with treatment, many people with CFS begin to show improvement.

How Possible Is Recovery

A 2014 systematic review reported that estimates of recovery from CFS ranged between 0 to 66% in intervention studies and 2.6 to 62% in naturalistic studies. There was a lack of consensus in the literature on how recovery should be defined, with almost all of the 22 included studies measuring recovery differently. Recovery was operationally defined by reference to, either alone or in combination: fatigue or related symptoms; function; premorbid function; and/or brief global assessment (which was the most common outcome measure, but does not provide information on symptoms and function, and does not "provide assurance that patients have substantially recovered rather than simply improved"). Focusing on only fatigue or function may overestimate recovery rates, because patients may show selective rather than overall change. A patient with reduced self-reported fatigue may still experience functional disruptions, pain, sleep disturbances, or malaise. "Recovery" in the reviewed studies was often based on limited assessments, less than a full restoration of health, and self-reports with a general lack of more objective measures. In the absence of definitive measures, recovery criteria should set high but reasonable standards for behavioural recovery which approach restoration of pre-morbid health. When objective measures are used, such as the relatively objective behavioural measure of actigraphy, the results have been contrary to the cognitive behavioural model of CFS which predicts increased physical functioning as a result of intervention, as otherwise 'successful' trials did not find significant changes in physical activity. The authors state "a more modest interpretation of 'recovery' might characterize such outcomes as successful adaptation of illness-related behaviour and attitudes to ongoing but perhaps diminished illness", "improved or recovered patients may have continued to avoid activity levels that provoked debilitating postexertional symptom flare-ups", which "would seem to be more consistent with a hypothesis of successful adaptation rather than recovery". It was concluded that more precise and accurate labels other than "recovery" (e.g. clinically significant improvement) may be more appropriate and informative for the improvements reported in previous research, and in keeping with commonly understood conceptions of recovery from illness, recommended a consistent definition of recovery that "captures a broad-based return to health with assessments of both fatigue and function as well as the patient’s perceptions of his/her recovery status" and "the recovery time following physical and mental exertion".