Managing flare-ups in symptoms and relapse

1.14 Managing flare-ups in symptoms and relapse

1.14.1 Explain that flare-ups and relapses can happen in ME/CFS even if the person's symptoms are well managed.

1.14.2 Tell people with ME/CFS that:

• they are likely to be having a flare‑up if they experience a worsening of their symptoms beyond their normal day-to-day variation, which lasts a few days
• a relapse is when there is a sustained and marked exacerbation of ME/CFS symptoms lasting longer than a flare‑up and needing substantial and sustained adjustment of energy management.

1.14.3 Include guidance on managing flare‑ups and relapses in the person's care and support plan.

1.14.4 Evaluate and investigate any new symptoms or a change in symptoms and do not assume they are caused by the person's ME/CFS.

1.14.5 Discuss and agree self-management strategies with the person with ME/CFS to help them respond promptly if they have a flare‑up or relapse, and record these in their care and support plan. This should include:

• For a flare‑up:
  • identifying possible triggers, such as acute illness or overexertion (in some cases, there may be no clear trigger)
  • temporarily reducing their activity levels
  • monitoring symptoms, recognising that although flare‑ups are transient, some will develop into a relapse
  • not returning to usual activity levels until the flare‑up has resolved.
• For a relapse:
  • reducing, or even stopping, some activities
  • increasing the frequency or duration of rest periods
  • reassessing energy limits to stabilise symptoms.

1.14.6 If a flare-up or relapse cannot be managed using the person's self-management strategies outlined in their care and support plan or they are worried about new symptoms or a change in symptoms, advise the person to contact their named contact in primary care or the ME/CFS specialist team.

1.14.7 When a person with ME/CFS has a relapse, review their care and support plan with them (if needed), and discuss and agree a course of action, taking into account:

• possible causes of the relapse, if known
• the nature of the symptoms
• the severity and duration of the relapse (bearing in mind this can be years).