Chronic fatigue syndrome (CFS)

What is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease. It has been classified as a neurological disorder by the World Health Organization, though it affects many parts of the body, including the brain and muscles, digestive, immune and cardiac systems.

The term ‘myalgic encephalomyelitis’ means pain in the muscles, and inflammation in the brain and spinal cord. Scientists are starting to understand some of the biological changes in the bodies of people with ME/CFS, although they have not yet found how to prevent, or cure it.

Research has found that ME/CFS is associated with problems involving:

• The body’s ability to produce energy at a cellular level
• Immune, neurological and hormonal systems
• Blood pressure and heart rate regulation
• Digestion
• Sleep
• Cognition – how quickly information is processed

ME/CFS affects men, women and children of all ages, ethnicities, and socioeconomic backgrounds. 75-80% of people with the disease are female. It is estimated that up to 600,000 Victorians may be living with ME/CFS, and as many as 90% are undiagnosed.

What causes ME/CFS?

Despite researchers identifying many biological abnormalities in people living with the disease, we do not yet know the cause. For some people, the disease may be triggered suddenly by an infection, toxic exposure, anaesthetic, immunisation, or trauma such as car accident. In other people, ME/CFS may develop slowly over months or years.

Research clearly demonstrates that ME/CFS is a biological illness, and it is not caused by being unfit or mental health problems.

Symptoms of ME/CFS

The core symptom of ME/CFS is called post-exertional malaise (PEM), which is an increase in symptoms and reduction in function after minimal physical or mental activity. Sometimes people refer to this as a “crash” or “payback”.

Research shows that people with ME/CFS have a different physical response to activity or exercise from other people. This includes abnormal exhaustion after any physical or mental activity that would not have caused problems before developing ME/CFS. The amount of exertion that causes PEM varies according to illness severity, and can change over time. The response may be delayed, perhaps after 24 or 48 hours, which can make it hard to work out how much activity is too much. Depending on the amount and type of exercise or activity, PEM may last for a few days, or serious relapses lasting weeks, months or even years.

People with ME/CFS find that activities they once took for granted take an enormous toll on their health. For example, a short stroll, coffee with a friend, getting their child ready for school or catching the train to work, which caused no problems before, may now be very difficult or impossible to do. Sometimes, one activity is okay, but then adding in another activity can be too much and lead to PEM.

ME/CFS is a very complex, multi-system, chronic illness, and people living with it can experience many symptoms. Not everyone will experience all of these symptoms, and not all are required for diagnosis.

Common symptoms include:

• problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling (sometimes called ‘neurocognitive problems’)
• disrupted sleep
• pain or aches in the muscles, joints or head
• changes in blood pressure, feeling dizzy or pale
• palpitations, increased heart rate or shortness of breath with exertion or on standing
• allergies or sensitivities to light, smells, touch, sound, foods, chemicals and medications
• gastrointestinal changes such as nausea, bloating, constipation, diarrhoea
• urinary problems
• sore throat, tender lymph nodes and a flu-like feeling
• marked weight change – extreme loss or gain
• inability to cope with temperature changes.

Symptoms may fluctuate over short periods of time, even from hour to hour, which can make planning activities difficult. Symptoms may also change over a longer period of time, like months or years. It is helpful for friends and family to understand that people with ME/CFS may have to cancel or change plans at the last minute.

How does ME/CFS affect people?

ME/CFS affects different people in different ways, some more severely than others. There are four levels of severity of ME/CFS, which give an indication of the level of disability ME/CFS can create:

• mild: 50% reduction in pre-illness activity
• moderate: mostly housebound
• severe: mostly bedridden
• very severe: totally bedridden and need help with basic activities including nutrition and hydration.

The severity of ME/CFS can vary over time. A person living with ME/CFS could be at one level of severity now, then their disease could either improve or deteriorate over time. For some patients, their disease can worsen significantly with no known cause. Other patients have a “fluctuating illness” where they have better and worse periods, which last for months or years. It is unclear why this happens.

For most people, ME/CFS is a lifelong disease. Full recovery (a return to pre-illness functioning) is rare and estimated at less than 10%. For some people with ME/CFS, as time passes and their disease improves, they will find they can do more, but it is a slow and gradual process. However, this is not the case for everyone. Some people find their disease worsens over time, others may remain somewhat stable. With support and pacing, people can often improve their quality of life.

Diagnosis and treatment for ME/CFS

Currently, there is no single test to diagnose ME/CFS. Doctors make a diagnosis by excluding all other illnesses that might be causing symptoms and following accepted diagnostic criteria. The person’s results from routine medical tests will often be normal, but additional tests may show abnormalities.

Diagnostic criteria for ME/CFS using the National Academy of Medicine clinical criteria

For a diagnosis of ME/CFS, the person must have the following three symptoms:

1. Substantial reduction in functioning and persistent and profound fatigue for at least 6 months. The person is unable to undertake the same level of activity before they became ill. Their fatigue is not the result of significant exertion and is not substantially alleviated by rest.
2. Post-exertional malaise.
3. Unrefreshing sleep.

Diagnosis also requires at least one of the following two symptoms:

1. Cognitive impairment (difficulty with memory, finding words, understanding etc).
2. Orthostatic intolerance (symptoms like palpitations, sweating, dizziness, nausea when standing that are reduced or eliminated when lying down).

It is important to note that these are not the only symptoms of ME/CFS, just the minimum needed to meet the diagnostic criteria.

While diagnosis requires that a person has had symptoms continually for six months, early intervention with pacing and rest can help reduce symptoms, improve quality of life and reduce the risk of exacerbating the disease. Research suggests that patients who are able to pace their activity and not push themselves tend to do better in the long term. Pacing and rest can start even prior to an official diagnosis.

While there is currently no cure and no evidence-based treatments, it is important to find a doctor who is not only sympathetic to ME/CFS, but can work with you to help manage your symptoms.

It is also common for people with ME/CFS to have other co-occurring conditions such as fibromyalgia, mast call activation disorder and connective tissue problems. These do not rule out a diagnosis of ME/CFS, but managing them can help improve overall quality of life.

Pacing activity for people with ME/CFS

Pacing, or keeping within your available energy, is a self-management strategy to help people with ME/CFS make sure that they don’t overdo activity or exercise. It reduces the likelihood of triggering PEM and can help reduce symptoms. Pacing is not a cure for ME/CFS and does not treat the underlying, physical cause of the disease.

The goal of pacing is for activity to be sustainable, so that the person can have some stability in their symptoms and what they can do each day. Pacing should be used in conjunction with rest.

The most challenging aspect of pacing is that PEM is very often delayed by as much as 24-48 hours, which can make it difficult to recognise when you’ve done too much. Using tools like an activity diary or heart rate monitor help you learn about your body and how much activity you can safely tolerate.

Suggestions on how to pace yourself include:

• Use an activity diary to track your activity and symptoms across the course of a week. This can help you identify what your limits are. For those with less severe ME/CFS, a pedometer can help measure the amount of physical activity undertaken each day. A heart rate monitor can also help track activity levels and help you know when to stop and rest.
• Break down activity into small chunks, with rest breaks in between. Continue to use an activity diary to monitor symptoms as you change your activity levels to identify what is sustainable. The goal is to avoid large crashes.
• Most people find that rotating between physical and cognitive activity helps spread the energy load. Identify the most taxing activities for you, and plan extra rest before and after. Avoid too many taxing activities on the same day.
• Find ways to conserve energy used for a given task. For example, use a shower chair, or a stool in the kitchen when cooking or doing dishes.
• Listen to your body. Even if you think you can keep going, when your body tells you it needs to stop, take time to rest. Most people find that they need to do less than they think they can in order to minimise PEM.
• Be realistic. It is impossible to pace perfectly, and this should not be the goal. Unavoidable responsibilities, like caring for children, can make it difficult to pace. Sometimes having fun is important as well. Think of pacing as a tool to help reduce symptoms.
• Remember that emotions use energy too. Times of stress or emotional upheaval will drain your energy, which will mean there is less energy available for other things.
• If you have overdone activity or exercise, or suffer a crash for any reason, decrease the level of activity and rest more. Repeatedly overdoing it may cause a severe and long-lasting relapse, bringing with it a worsening of many ME/CFS symptoms.

Exercise and ME/CFS

Vigorous aerobic exercise is helpful for many chronic illnesses, but people with ME/CFS can’t tolerate traditional exercise routines due to post-exertional malaise. ME/CFS is what’s known as an energy-limiting chronic illness (ECLI), which means the body doesn’t make energy properly at a cellular level. Cells in people with ME/CFS are like a battery which never fully charges and goes flat very quickly. This impacts how much people with ME/CFS can do on a day-to-day basis, especially how much exercise they can undertake.

Exercise can make people with ME/CFS feel worse rather than better, so they must learn to pace activities in order to stay within their “energy envelope” (the amount of energy available).

Exercise is not a cure or treatment for ME/CFS. It does not repair the underlying problem, but can help improve functional strength or fitness if done safely. Some people with ME/CFS may be able to tolerate some exercise, but it must be carefully planned so as to not trigger PEM. Exercise capacity will be reduced (often significantly) from before becoming sick, so the person needs to adjust their expectations of themselves. For some, safe exercise may consist of holding a single stretch for 30 seconds, for others a 5 minute walk. Yet others may be unable to undertake any exercise at all due to the severity of their disease.

A person with ME/CFS should never be coaxed to push past their limit as this can be dangerous and cause long-term relapse. The goal is to balance rest and activity to avoid decreasing fitness levels from lack of activity and flare-ups of illness due to overexertion.

Tips for exercising safely with ME/CFS

If you feel you can tolerate some exercise, be guided by your doctor or specialist, but general suggestions include:

• Experiment to find the type of exercise that works best for you. Choose from a range of gentle activities such as stretching, yoga, (seated) tai chi, walking and light weight training. Often, people find exercises lying down use less energy.
• Keep an activity diary so you have a long-term picture of your performance levels and factors that might impact on your symptoms. Some people with ME/CFS find they feel good straight after exercise, but then crash later on, so make sure you monitor how you feel, hours to days after exercise.
• Stop the physical activity well before you feel any symptom flare. Pacing yourself is very important.
• Remember that the amount of exercise you can do will change from one day to the next.
• Listen to your body – if you don’t feel up to exercising on a particular day, don’t.
• Find out as much as you can about your ME/CFS. Make sure you consult with health professionals who fully understand ME/CFS as a biomedical disease

Housebound or bedbound with ME/CFS

About 25% of people with ME/CFS are housebound or bedbound. Those who are housebound may be able to undertake minimal daily tasks for themselves, such as brushing teeth, cooking or using a computer for short periods of time, but they have to pace their activity and often use aids to help them (such as a chair to sit on in the kitchen while cooking). They are unable to leave the house, often because this requires more energy than they have available. When they do leave the house, they often need mobility aids such as a wheelchair or mobility scooter, or other assistance (such as someone to drive them). Recovery from a trip out of the house can take days, or longer.

Some people are so severely unwell that they are bedbound some or all of the time. The most severely unwell may be unable to undertake even simple tasks, like eating or going to the toilet by themselves. They may require additional medical devices, such as feeding tubes, to help them get enough nutrition and fluids, and can be totally dependent on carers.

Children, young people and ME/CFS

ME/CFS can affect people of all ages, including the very young. Young people with ME/CFS, especially children under the age of ten, might have trouble knowing or articulating that something is wrong. They may not realise that their loss of stamina, or other symptoms they are experiencing, are not normal. Alternatively, they may not have the words to describe what they are feeling.

For both younger children and teenagers, schooling can be affected but ME/CFS is not school refusal. While school refusal can often be accompanied by physical complaints (like pain, headache or nausea), and these complaints may tend to disappear when the young person stays home, the pattern is different with ME/CFS. In a young person with ME/CFS, some symptoms never ease and symptom exacerbation is triggered by activity. In ME/CFS, symptoms are likely to be worse after school attendance, and can reduce with pacing and rest, which includes time away from school or during holidays.

Some young people with ME/CFS can continue to attend school, and others may be too unwell for regular classroom attendance. Parents, healthcare providers, schools and the child or teenager need to work together to come up with a plan for the young person’s continued education. This plan needs to take into account the energy limits of ME/CFS. Being creative and flexible is key and might include things like fewer subjects or school from home.

Getting older and ME/CFS

There is very little information on getting older and ME/CFS, however people can develop ME/CFS at any age. Additionally, all of the strategies such as pacing to reduce PEM and managing symptoms still apply. As people age, other problems with their health may also arise, so discussing any new symptoms with their doctor important.

Caring for someone with ME/CFS

Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can also help improve the quality of life of people living with ME/CFS.

Everyone involved in supporting someone with ME/CFS needs to understand Post Exertional Malaise, which is an abnormal, biological response to exercise or activity. This means the patient will not be able to do all of the activities they used to be able to do, and will benefit from practical and emotional support. People with ME/CFS will each have different needs and preferences, so it is important to talk with them about how best to provide support. This may include help with daily routines, family life, accessing healthcare and other personal priorities.

Mental health support and ME/CFS

ME/CFS is not a psychological disorder. However, living with a chronic illness is challenging, especially one that involves missing out on normal life activities, and this may lead to mental health problems like anxiety or depression.

Speaking with a qualified mental health professional who understands the challenges of living with ME/CFS can be very helpful. They can help with things such as coping with changes to schooling, employment or social activities, and symptoms such as difficulty with sleep or pain. With the availability of Medicare rebates for telehealth, many mental health practitioners now offer remote consultations which makes healthcare more accessible for those who are housebound or bedbound with ME/CFS.

Long COVID

Following COVID-19 infection, some people find they have ongoing symptoms. Where those symptoms occur within three months of the COVID-19 infection and last for at least two months, the World Health Organization has defined this as post COVID-19 or Long COVID.

Long-COVID may be several different conditions, as some people have persistent symptoms due to organ damage (such damage to their lung or heart) or symptoms from being on ventilation in hospital. Yet others have a condition which is similar or identical to ME/CFS, and for which PEM and exertion intolerance are key features. For these patients, the management suggestions on this page for pacing and rest may be helpful.

Where to get help

• Your GP (doctor)
• Allied health practitioner such as physiotherapist or occupational therapist
• Mental health practitioner
• Emerge Australia Tel. 1800 865 321, the Emerge Australia website has information for patients, healthcare practitioners and carers on how to manage ME/CFS and includes helpful fact sheets to download, read and share with others.