Chronic fatigue syndrome

We do not yet understand what causes ME/CFS, but research suggests that the immune system is involved. It often starts after an infection such as:

• glandular fever
• the flu
• COVID-19.

There is some evidence that the illness may run in families.

If you have ME/CFS, you become much less able to do things that used to be normal for you. You may have:

• feelings of being unwell after mental or physical effort
• overwhelming physical and mental fatigue
• flu-like symptoms
• pain including muscle and joint pain, headaches, nerve pain and frequent sore throats
• disturbed sleep, sleeping longer or feeling unrested after sleep
• trouble concentrating and poor memory
• bowel issues such as bloating, cramps, hard poos (constipation) and runny poos (diarrhoea)
• irregular heart beat
• chills and night sweats
• increased sensitivity to chemicals, medications, smells, light and noise.

Post-exertional malaise

Post-exertional malaise (PEM) is a term used to describe worsening of symptoms after physical, mental, or emotional effort that would not have caused a problem before the illness. You may feel like you have the flu, with body pain and fatigue, and need to lie down to rest. PEM is often delayed, happening 12 to 48 hours after the activity.

Orthostatic intolerance

You may also feel unwell when you stand or sit upright. This is known as orthostatic intolerance. Symptoms may include:

• feeling weak or dizzy
• feeling sick (nauseous)
• blurred vision
• inability to think clearly
• numbness or pins and needles in your hands.

ME/CFS can be difficult to diagnose. The symptoms of ME/CFS are similar to several other medical conditions, which need to be ruled out first. There are no specific tests available to diagnose ME/CFS.

Your healthcare provider will ask you about your symptoms and how they affect your life, including work or school. They may ask you to keep an activity diary to identify any patterns between your activity and symptoms.

For your healthcare provider to diagnose you with ME/CFS, you need to have the following key symptoms.

• Much less ability to do the kinds of activities that were normal before the illness, along with fatigue. This must last for at least 6 months in adults and 3 months in tamariki.
• Symptoms that get much worse after mental or physical activity (post-exertional malaise).
• Sleep problems, especially unrefreshing sleep, sleeping too little or too much, or difficulty falling asleep.

You also need to have one of:

• Difficulty thinking and concentrating
• Symptoms that get worse when sitting upright or standing.

Currently, there is no proven treatment or cure for ME/CFS. But there are self-care steps you can take to help you manage the symptoms of ME/CFS and improve your quality of life.

Try to manage your activity and conserve your energy with rest and pacing to avoid triggering episodes of post-exertional malaise (PEM). This may mean you have to reduce what you are doing or stop doing some things altogether. Do not keep pushing yourself or try to exercise yourself back to health — exercise does not cure ME/CFS.

Pacing sounds simple but it is not easy to do, and it is individual to you. Be kind to yourself as you cope with daily demands and as you learn about the limits of your energy.

Consider:

• keeping an activity and symptom diary for a few weeks to see if you can identify any patterns, early warning signs and triggers of PEM
• dividing activities into smaller tasks, or short bursts, with rest breaks in between
• alternating between thinking and physical tasks
• prioritising what to spend energy on — aim to balance necessary activities with activities you enjoy
• observing your body for signs that more rest is needed.

If you have orthostatic intolerance:

• drink plenty of fluids
• try raising the head of your bed by 20 centimetres
• avoid long or very hot showers.

You might also want to:

• practice mindfulness and self-compassion
• find out about your local support groups.

Many people improve over the first 2 years. Tamariki and rangatahi are more likely to recover fully. After 2 years, rates of recovery are low but support and careful management can often increase quality of life.

Talk to your healthcare provider about options to manage your symptoms. They may be able to prescribe you medication for some symptoms.

Talking to a psychologist or counsellor may help you to establish good coping mechanisms to deal with the challenges of living with a long-term illness. You may wish to contact a local ME/CFS support group for information and connections.