Awareness of ME/CFS and its impact

Awareness of ME/CFS and its impact

1.1.1 Be aware that ME/CFS:

• is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated.
• affects everyone differently and its impact varies widely for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity.
• is a fluctuating condition in which a person's symptoms can change unpredictably in nature and severity over a day, week or longer.
• can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work and education.

1.1.2 Recognise that people with ME/CFS:

• may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness. Consider:
  • the impact this may have on a child, young person or adult with ME/CFS,
  • that people with ME/CFS may have lost trust in health and social care services and be hesitant about involving them.