A new study suggests that fewer than one in three health trusts are currently providing adequate care for chronic fatigue syndrome sufferers. But what exactly is chronic fatigue syndrome, what does the new study actually say and what can care home or domiciliary care managers do to help both service users and staff with the condition? Martin Hodgson finds out.

Care homes or domiciliary care services may have service users who suffer from chronic fatigue syndrome (CFS), a debilitating condition that can have a significant effect on people’s lives. Some staff may also suffer from the illness and may require active support from managers to enable them to stay at work.

What is chronic fatigue syndrome?

Chronic fatigue syndrome — also commonly known as myalgic encephalomyelitis or ME — is a long-term chronic illness which attacks the nervous and immune systems and causes extreme physical and mental tiredness.

It is estimated that about 250,000 people have CFS or ME in the UK. It can affect any age group, including children, but most commonly appears in adults in their 40s and 50s, with women being around four times as likely as men to develop the condition. The most common age of onset in children is 13 to 15.

Unfortunately, those with CFS or ME must cope not only with the ill effects of the condition but also with a general lack of understanding in society, many people failing to recognise it as a “real” disease and believing that it is somehow “all in the head”. For the most part, this lack of understanding is probably derived from the fact that the condition is poorly understood at present.

The condition is recognised by the Department of Health and by the World Health Organization as a genuine, long-term debilitating disease, and the National Institute for Health and Clinical Excellence (NICE) emphasises that it is a real illness and has published guidelines for its care.

The cause is unknown. CFS often happens after an infection and is sometimes known as post-viral fatigue syndrome. Less commonly it occurs after stress or an accident. Many experts actually see CFS as a spectrum of different illnesses triggered by different factors in people who have an underlying predisposition to the illness. Theories as to the cause include disorders of the immune system, neurological system or hormonal system.

There are a wide range of symptoms, the principal one being extreme tiredness. This is reported by sufferers to be very different from any “normal” tiredness in that they feel completely drained. Sufferers generally feel less able to cope with levels of activity that were previously normal for them and even everyday physical activity makes them feel exhausted.

Common symptoms of CFS, which usually happen 24 to 48 hours after mental or physical activity, include:

  • fatigue that lasts more than 24 hours after exertion

  • muscle and joint pain, but no swelling

  • painful glands in the neck or armpits

  • sore throat and headaches

  • forgetfulness, memory loss, confusion, or difficulty concentrating

  • sleep disturbances — waking up feeling tired or unrested or having trouble getting to sleep

  • flu-like symptoms

  • palpitations

  • dizziness and nausea

  • sweating

  • visible muscle-twitching

  • irritable bowel syndrome symptoms, such as constipation or diarrhoea and bloating

  • mood swings.

Most people with CFS find that their symptoms come and go, often returning after illness or stress, and symptoms may vary throughout the day. Post-exertional fatigue or malaise can be a particular problem, with sufferers finding that the level of energy expended on an activity can worsen their condition. Recovering to previous levels can take several days or even longer and often means being confined to bed for long periods.

CFS is a difficult condition to diagnose. There are no tests and much of the early efforts of diagnosis will usually be to exclude other conditions. The GP will typically be the first port of call and it may take several months before any diagnosis is determined. The GP will be able to provide some information about the condition and available treatments and may refer to a specialist. The GP may also put patients in touch with support services.

Some people find that their symptoms improve over time and a few can find the symptoms disappear entirely. Unfortunately, many others continue to suffer, usually with a pattern of active disease phases and remissions, and need a great deal of support.

What treatment options are available?

There is no “cure” for CFS and treatment generally aims to manage the symptoms and enable sufferers to regain something of their normal lives or to live with the condition. Different treatments work for different people.

Painkillers such as paracetamol or ibuprofen are often used to relieve muscle and joint pain, headaches and other physical symptoms. Other people who suffer from depression may also be prescribed antidepressants.

Massage and stretching may also help to relieve muscle pain and sufferers will be advised to eat a healthy, balanced diet. Many people keep a food diary to identify if any foods trigger symptoms.

Cognitive behavioural therapy is often used. This is a short-term psychological treatment that helps people to identify unhealthy ways of thinking and behaving and develop more positive strategies.

Such psychological therapies do not mean that CFS or ME are “all in the mind”. Rather, they help people to cope with their symptoms and help them boost their self-esteem and confidence.

Many people believe in complementary therapies such as relaxation therapy, acupuncture, homeopathy or food supplements such as coenzyme Q10.

Chronic fatigue syndrome and home care

Domiciliary care is an important area of much-needed support for people with CFS or ME. Many sufferers are unable to leave their home because of their condition and Action for ME estimates that up to 25% of those who have the most severe forms of the condition are likely to be confined to bed for months or even years on end.

Many will require help with normal activities of daily living; of those who can get outdoors, most find travel or shopping difficult and may require assistance getting to clinics or hospital appointments.

People living at home with CFS or ME may have to endure a significant degree of social isolation and may also suffer from the negative views of the illness from those around them, including family, friends and neighbours. There is generally a significant level of skepticism and even disbelief about the illness and this can lead to those with the condition becoming even more isolated and withdrawn.

How can care managers help service users cope with the condition?

Inevitably, a number of people with CFS or ME will be service users in care homes or nursing homes or will be receiving domiciliary care. All will require support and understanding.

During an active phase of the disease sufferers should usually be advised to rest and to maintain their normal sleeping patterns, if they can. They should be urged to pace themselves and manage their lifestyle so that they find a level of physical and mental activity with which they are comfortable.

Once sufferers begin to improve they can make gradual increases to their levels of activity but should ensure they still get enough rest and do not do large bursts of exercise, which can set them back. Graded exercise therapy is often recommended, starting with an activity that can be done comfortably and increasing levels of activity every few days.

Sufferers may require help to make the necessary lifestyle changes to live with CFS, such as help with getting the balance right between levels of activity and rest.

Some people lack empathy with sufferers of CFS and believe they are exaggerating their symptoms. Sufferers may not appear unwell and people can lose patience with their level of exhaustion or how little they are able to do. Sufferers can find such attitudes frustrating and distressing and they can cause tension in families and relationships, which can add to their problems.

It may be helpful for a sufferer to talk to other people who understand their condition; contact details of support groups should be provided.

The Action for ME survey

A Freedom of Information survey of trusts and health boards in the UK conducted by the charity Action for ME suggests that support services provided in many parts of the country are inadequate and that established guidelines are not being fully adhered to.

For instance, the survey reports that only 15 NHS Trusts stated that they offered a specific “pathway” for sufferers to ensure that they got the right treatment. In Scotland a similar problem was identified with only half of the country’s health boards offering health pathways for ME sufferers.

Such a pathway is a key element in the care of CFS or ME set out by NICE.

Ignorance, Injustice and Neglect, published in May, also reported that only 37 out of 151 Trusts provided some sort of domiciliary care and only a third of those provided figures about how many were treated. Only one Scottish, one Welsh and one Northern Irish health board offered home visits for ME sufferers.

Sir Peter Spencer, the charity's chief executive, stated: "Health services in all of the four home nations are still not even beginning to address the needs of this vulnerable patient group.”

Action for ME called for the NHS to do more to ensure that services were properly commissioned in future and that special arrangements should be made by the new NHS Commissioning Board.

How should employers manage staff with CFS or ME?

Staff with CFS or ME are covered by the Equality Act 2010. Many people with CFS or ME continue to work and may have concerns about their physical abilities, about losing their job and a perceived lack of understanding from managers and colleagues.

Prior to diagnosis, a member of staff with CFS or ME may have been struggling with the demands of their job and typically may have built up a poor sickness record or will have had to take a considerable period of time off in one go. In all such cases the member of staff should be referred to an occupational health service as soon as possible. The role of the occupational health service will be to assess the employee’s health and fitness for work and to advise the employer on a return-to-work plan. Such a plan will usually include a gradual return to full duties or full hours or may suggest adjustments, such as a change of duties to a less demanding job.

Occupational health services are well placed to advise on the requirements of the Equality Act and will be able to suggest “reasonable adjustments” that the employer should make to enable the member of staff to continue to work.

Early referrals are essential. The failure to put into place occupational health support can lead to protracted sickness absence and may end in ill-health retirement or termination of employment. Providing effective support is more likely to result in enabling a valued member of staff to remain in work. Maintaining staff in work is usually more cost-effective than terminating employment and having to re-employ.

Further information [B]

CG53: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management can be obtained from the NICE website.

Last reviewed 21 June 2012