Danger Dust

Summary of Key Recommendations for Health and Social Care Professionals from NICE 2021 Guideline for ME/CFS

1. Awareness of impact

Disease complexity

Professionals should recognise that ME/CFS “is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated”. Furthermore, they should acknowledge the broad and debilitating effects of ME/CFS on activities of daily living, family life, social life, work, education, and emotional wellbeing. Even seemingly minimal activities, have potential to trigger post-exertional malaise (PEM), and the condition fluctuates, involving “flare-ups and relapses even if symptoms are well managed”.

Stigma and Isolation

Professionals should acknowledge that individuals 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.”

NICE recognises that individuals may not be seen at their worst, as their condition may make it difficult to seek help when most symptomatic, e.g., cognitive difficulties impacting communication.