NICE ME/CFS draft guideline: managing flares & relapses

The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we highlight the recommendations for managing flares and relapses:

1.13 Managing flares and relapse (p37)

Flares

1.13.1 Recognise a flare in symptoms of ME/CFS when there is a sustained exacerbation of symptoms to a level greater than the person’s usual day to-day variation, which usually lasts a few days.

1.13.2 Respond promptly to a flare in symptoms by:

identifying possible triggers, such as acute illness or overexertion (in some cases there may be no clear trigger)
temporarily reducing activity levels
monitoring symptoms, recognising that although flares are transient, some will develop into a relapse
not increasing activity levels until the flare has resolved (see the relapse section if flare is prolonged).

Relapse

15 1.13.3 Recognise a relapse when there is a sustained and marked exacerbation of ME/CFS symptoms lasting longer than a flare and needing substantial and sustained adjustment of energy management.

1.13.4 When a person with ME/CFS has a relapse, review their management plan with them 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).

1 1.13.5 During a relapse, discuss and agree with the person with ME/CFS (and their family members or carers, as appropriate):

reducing, or even stopping, some activities
increasing the frequency or duration of rest periods
re-establishing a new energy envelope to stabilise symptoms.

6 1.13.6 If a flare or relapse cannot be managed using the person’s self management strategies outlined in their management plan, advise the person to contact their named contact in the primary care or specialist team for review.

10 1.13.7 Once a flare or relapse has resolved or stabilised, discuss with the person:

whether their management plan needs to be reviewed and adjusted to reflect their current symptoms and energy envelope, because this may be different from before the flare or relapse (for people participating in physical activity programmes see recommendations 1.11.21 and 16 1.11.22)
their experience of the flare or relapse to determine, if possible,
whether strategies can be put in place to manage potential triggers in the future
investigate any new symptoms that may have caused the flare or relapse.

Why the committee made the recommendations

In the committee’s experience, flares and relapse are a common part of ME/CFS. The committee considered it important to give people information about what a flare is, how to recognise one and how they can lead to a relapse if activity is not monitored and adjusted.

The committee discussed the importance of recognising when a flare has moved to a relapse and that it needs to prompt a review of the person’s management plan. It is also possible that a relapse may lead to someone moving to a more severe form of ME/CFS. Part of the review of the management plan is to consider what the causes of relapse might have been and to consider this when revising the plan.

What is a flare? (p42)

A flare is a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the ability of the person to perform their usual activities. Flares may occur spontaneously or be triggered by another illness, overexertion or stress of any kind. The worsening of symptoms is transient and flares typically resolve after a few days (1 to 3 days), either spontaneously or in response to temporary changes in energy management or a change in treatment

What is a relapse? (p44)

A relapse is a sustained and marked exacerbation of symptoms lasting longer than a flare and needing a substantial and sustained adjustment to the person’s energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare or a relapse. The person’s symptoms and level of disability may be similar to illness onset. Relapses can lead to a long-term reduction in the person’s energy envelope