Flare-ups and relapses, also referred to as setbacks, can happen with chronic fatigue syndrome (ME/CFS) and other fatigue conditions, even if symptoms are well managed.

A flare-up is a worsening of symptoms beyond your normal day-to-day variation and lasts a few days.

A relapse is an increase in or worsening of symptoms that lasts longer than a flare-up. This may lead to a longer-term decrease in energy levels and need you to adjust your activities.

When living with a chronic condition such as ME/CFS, or with another fatigue condition, flare-ups and relapses can be common. Managing these form part of the rehabilitation journey and do not mean you are not recovering.

What causes flare-ups and relapses?

This is different for each person. Learning what triggers your flare ups, can help minimise a relapse. There are number of possible factors that could contribute which include:

• Overexertion or ‘overdoing it’
• Worry or anxiety
• Stress or pressures from different people / situations
• Periods of illness due to a viral infection or other health related issue
• Low mood/seasonal factors – some people experience how they feel impacts on their fatigue and other symptoms

Not all these factors apply to everyone. There may be many different causes for your flare-up or relapse. Therefore, it is important to reflect on possible contributing factors that may have led up to this flare up. At the beginning it may be helpful to do this with some support and guidance with a health care professional, until you are able to recognise the links. This will help to minimise flare-ups or relapses in the future.

Although it’s helpful to recognise patterns and triggers, it is also important to not overthink when you notice one. Being mindful that just because a flare-up happened after doing an activity/feeling a certain way once, it doesn’t mean it will happen every time.

What can you do when you experience a flare-up?

Don’t panic!

• Maintain your sleep routine keep to your anchor points of wake up and bedtime and avoid daytime sleep
• Prioritise your energy levels so that you do what is important as well using time and energy for activities that you enjoy doing.
• Keep moving: movement is important no matter how much or how small it is. Keep to daily essential tasks where possible like personal hygiene and meals sitting up and short walks/getting outside.​​​​​​​
• Use relaxation to help calm the nervous system to a more restorative mode.​​​​​​​
• Think: the way we think influences how we feel. In the middle of a flare-up, it is easy to slip into bad habits and dwell on the negative. Try and be aware of this, and try different ways of thinking​​​​​​​
• Socialise: it’s easy to feel isolated. Socialising with your closest and trusted friends can help improve your wellbeing and help address the negative thoughts of the mind and improve the physical sensations in the body.

If a flare-up turns into a relapse:

You may need to reduce or even stop some activities.

Increasing the frequency or duration of rest periods can help manage your energy and activity levels.

Re-assess your energy limitations with the aim of stabilising your symptoms.

If self-management strategies are not working, contact your healthcare team for advice: They can review your care/support and discuss and agree a course of action, considering:

• possible causes of the relapse, if known
• the nature of the symptoms
• the severity and duration of the relapse
• how to get back to your baseline and gradually build up

After a flare-up or relapse

Some steps that you may find helpful after a flare-up or relapse:

1. Take time to reflect.
2. Writing things down may be helpful in learning what you identified as triggers, as well as learning what you did and did not find helpful in managing the flare up/relapse.
3. Develop a flare/ relapse management plan for bad days, before a flare-up or relapse occurs, so you know what to do when you are having a flare-up or relapse: how to manage the situation, who to contact for support; what to have in place to improve again.
4. Share your flare / relapse management plan with important people around you, so they can help.
5. Remind yourself that the flare / relapse will pass. With the right understanding, support and tools in place, you can start to feel better and improve again.