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.