NICE Guideline > Information about ME/CFS

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Information about ME/CFS

1.6.3 Give people with ME/CFS and their family or carers (as appropriate) up-to-date information about ME/CFS as soon as it is suspected.

  • Tailor information to people's circumstances, including their symptoms, the severity of their condition and how long they have had ME/CFS.
  • Ask people regularly if they would like more information or to revisit discussions.

1.6.4 Explain that ME/CFS:

  • is a fluctuating medical condition that affects everyone differently, in which symptoms and their severity can change over a day, week or longer.
  • varies in long-term outlook from person to person although a proportion of people recover or have a long period of remission, many will need to adapt to living with ME/CFS.
  • varies widely in its impact on people's lives, and can affect their daily activities, family and social life, and work or education (these impacts may be severe).
  • can be worsened by particular triggers these can be known or new triggers or in some cases there is no clear trigger.
  • can be self-managed with support and advice (see the section on energy management).
  • can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.

1.6.6 Give people with ME/CFS and their family or carers (as appropriate) information about:

  • self-help groups, support groups and other local and national resources for people with ME/CFS
  • where to access advice about financial support, including applying for benefits.
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