Chronic fatigue syndrome (CFS)

The cause of CFS is not yet fully understood, but it is likely that several factors contribute to its development. There are changes in the immune system and body chemistry.

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 the potential for getting CFS is genetic and runs in families. Some people experience ongoing effects of COVID-19 infection, known as long COVID, which are very similar to the symptoms of chronic fatigue syndrome. 

Other factors that may contribute include:

• emotional or physical distress
• not enough sleep
• hormonal imbalance
• over-exercising.

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:

• poor 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 effort. 

Some people also report a range of other symptoms such as nausea, loss of appetite, irritable bowel syndrome (IBS), 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.

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:

1. 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 much relieved by rest.
2. Four or more of the other symptoms listed above in the symptoms section that 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 varies, so the diagnosis may range from mild CFS to severe CFS as follows:

• Mild – you can move about, can care for yourself and do light housework with difficulty. You may be well enough to work, 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.

A treatment plan for CFS aims to relieve your symptoms to improve your quality of life. The plan should include: 

• a plan for how to manage stress
• a very gentle exercise plan
• a nutritious diet, with regular meals/snacks to keep up your 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 techniques
• medication for pain
• psychological input if you are particularly stressed or depressed.

Medications

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 doctor 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 poor sleep, and medication may improve 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 be useful for you.

In addition to the treatments above, there are things you can do to help manage this condition, such as:

• learning about CFS(external link)(external link)
• 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 to prioritise the things you need to get done, and then pacing yourself by dividing them into short times of activity with rest breaks in between
• learning mindfulness, meditation or creative visualisation
• getting out into nature regularly, listening to music and enjoying your pets
• developing a support network of understanding friends and family/whānau for when you need help
• joining a support group(external link)(external link) if there is one in your area
• talking to your doctor about whether there are any medications or supplements that may help you.

• Take along a list of all the symptoms you are experiencing in case you forget some of them during your talk with the doctor or nurse. 
• Talk about how much you can do at work or school and around the house.  
• Ask if there are any financial supports or services (eg, home help or personal care support) you could apply for. 
• Ask for help with pain, sleep and remaining active if these are problems for you.
• Ask about what you should be eating. 

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 impact 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. 

The Associated NZ ME Society (ANZMES) has support groups(external link)(external link) around the country. 
Complex Chronic Illness Support(external link)(external link) Phone 07 281 1481. Information, support and practical advice for people, families and carers affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).