Chronic fatigue syndrome (CFS) is a complex illness that affects many systems of your body, particularly the nervous and immune systems. People with CFS experience extreme tiredness that doesn't go away with rest and can’t be explained by other causes.
- In New Zealand, there are an estimated 16,000–20,000 people with chronic fatigue syndrome. It can affect people of all ages, ethnic and socio-economic groups, although women are more likely than men to develop this condition.
- CFS is characterised by severe, disabling fatigue. Other symptoms include musculoskeletal pain, sleep disturbance, impaired concentration and headaches.
- CFS can be difficult to diagnose, and other conditions have to be ruled out before a diagnosis is made based on specific diagnostic criteria.
- There is no specific treatment for this condition.
- There are self-care steps you can take to help you manage this condition, such as reducing stress, getting support, taking care not to over-exercise, improving your sleep and making sure your diet is balanced with plenty of good nutrients.
What causes chronic fatigue syndrome?
The cause of CFS is not yet fully understood, but it is likely that a number of factors contribute to its development.
CFS is usually triggered by a viral infection, such as glandular fever or influenza, but any infection may be the trigger. It is likely that there is a genetic vulnerability to this happening.
- emotional or physical distress
- not enough sleep
- hormonal imbalance
What are the symptoms of chronic fatigue syndrome?
People with CFS experience overwhelming physical and mental fatigue (tiredness). This is different to the tiredness that well people experience after strenuous exercise or a day's work. CFS-associated fatigue can be debilitating and does not readily get better with rest.
Other common symptoms include:
- impaired memory or concentration
- sore throat
- tender lymph nodes
- muscle pain
- multiple joint pain without joint swelling or redness
- headaches of a new type, pattern or severity
- unrefreshing sleep
- tiredness that can last for more than 24 hours after physical or mental exertion.
Some people also report a range of other symptoms such as nausea, loss of appetite, irritable bowel syndrome, bloating, diarrhoea, irregular heartbeat, chest pain, jaw pain, night sweats, increased sensitivity to alcohol or medication, chronic cough, dizzy spells or dry eyes.
The severity of symptoms can vary from day to day, or even within a day.
How is chronic fatigue syndrome diagnosed?
Diagnosis can be difficult because the symptoms of CFS are similar to those of a number of other medical conditions, which need to be ruled out first. For a diagnosis of CFS the symptoms must match both of the following criteria:
- Severe chronic fatigue lasting 6 months or longer, with other medical conditions ruled out by clinical diagnosis. The fatigue is not lifelong or the result of ongoing exertion, and is not relieved significantly by rest.
- Four or more of the other symptoms listed above in the Symptoms section. These were not experienced before the fatigue started.
If you are experiencing these symptoms, your doctor may use more detailed and accurate criteria based on a CFS diagnostic questionnaire to confirm the diagnosis. In children, the diagnosis can be made after 3 months.
The severity of symptoms range, so the diagnosis may range from mild CFS to severe CFS as follows:
- Mild – you are able to move about and can care for yourself and do light housework with difficulty. You may be well enough to work or attend school or study, if you have learnt to pace yourself carefully.
- Moderate – you have reduced ability and are restricted in most activities of daily living. You are likely to have stopped work or education and have poor sleep.
- Severe – you are unlikely to be able to do very much for yourself, spend much of your time in bed and may depend on a wheelchair. You are also likely to have severe problems thinking, remembering or concentrating, and be sensitive to light and noise.
What is the treatment for chronic fatigue syndrome?
A treatment plan for CFS aims to relieve the symptoms, which improves your quality of life. The plan should include:
- a plan and actions to manage stress
- a very gentle cautious exercise plan
- a nutritious diet, with regular meals/snacks to keep up energy
- supplements if your diet lacks a good balance or if your blood tests indicate deficiencies
- a sleep management plan, which may include medication
- physiotherapy to help with pain and good breathing technique
- medication for pain
- psychological input if you are particularly stressed or depressed.
There are some useful medications for treating CFS, and these can be used to relieve some of the symptoms.
Over-the-counter painkillers occasionally can help ease headaches as well as muscle and joint pain. Your GP may 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 or fibromyalgia.
People with CFS usually have non-restorative sleep, and medication may enhance your sleep quality and give you a better chance of recovery.
Antidepressants can be important for people with CFS who are experiencing depression or anxiety as a result of living with CFS. Talk to your doctor about whether these might useful for you.
What self-care can I do with chronic fatigue syndrome?
In addition to the treatments above, there are things you can do to help you manage this condition, such as:
- learning about CFS
- reducing your stress
- getting plenty of rest
- making sleep a priority – if you are having trouble sleeping, check out these tips to improve your sleeping habits
- eating a healthy diet to make sure your body is getting the nutrients it needs
- having plenty of salt if you have low blood pressure and a tendency to feel dizzy or even faint on standing (common in people with CFS)
- learning mindfulness, meditation or creative visualisation
- getting out in nature regularly, listening to music and enjoying your pets
- developing a support network of friends and family for when you need help
- joining a support group if there is one in your area
- talking with your doctor as to whether there are any medications or supplements that may help you.
What is the outlook for someone with chronic fatigue syndrome?
The long-term outlook varies quite a bit. There may be times when your symptoms are not too bad and other times when they flare up and become worse. However, many people improve over time (over months and years rather than weeks) and some recover well. Children and younger people have a better rate of full recovery. Early diagnosis and treatment may lessen the severity of the illness. The important thing to remember is that this is not a progressive or life-threatening disease and that for many people full recovery is possible.
What support is available with chronic fatigue syndrome?
The Associated New Zealand ME Society (ANZMES) has support groups around the country.
Complex Chronic Illness Support Phone 07 281 1481. Information, support and practical advice for people, families and carers affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) in the Bay of Plenty.
What is ME (CFS)? The Associated New Zealand ME Society (ANZMES)
- What is ME? The Associated New Zealand ME Society
- Myalgic encephalomyelitis/chronic fatigue syndrome Patient Info, UK, 2016
- Chronic fatigue syndrome Auckland Regional HealthPathways NZ, 2018
- Friedberg F et al. Chronic fatigue syndrome/myalgic encephalyitis – a primer for clinical practitioners International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), 2014
|Dr Ros Vallings is a GP in Auckland. She runs a medical practice, where she specialises in chronic fatigue syndrome (CFS/ME) and related conditions. She runs seminars, gives papers at conferences, and has published books on this condition, as well as undertaking research and providing input to national and international guidelines.|