5. Information & Support

The NICE Guideline on ME/CFS: Diagnosis and Management

Communication

1.6.1 Ensure information is provided to people with ME/CFS and their family or carers (as appropriate):

• - in a variety of formats, such as written materials, electronic and audio, and suitable for their needs (for example, in their preferred language or an accessible version).
• - both in person in clinical settings and for them to use at home.

Follow the principles on communication, information giving and shared decision making in the NICE guidelines on patient experience in adult NHS services , people's experience in adult social care services and shared decision making .

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.