Caring for People with Severe Myalgic Encephalomyelitis: an open heart, open mind approach

Caring for People with Severe Myalgic Encephalomyelitis: an open heart, open mind approach:

• About Myalgic Encephalomyelitis (ME):
  • ME is a multi-system dysfunction classified by the WHO.
  • In severe cases, individuals are largely incapacitated, often housebound or bedbound.
  • 25% of those with ME face extreme isolation and lack adequate care or medical support.
• Key Principles of Care:
  • The carer’s presence—words, actions, energy, and attitudes—has a significant impact.
  • Every movement, breath, or noise can worsen symptoms; ultra-awareness is crucial.
  • A moment-by-moment, flexible, and mindful approach (“MOMENT” Approach) is essential:
    • Moments can be positive, negative, or neutral; carers must strive to minimize harm.
    • Attention to detail, patience, and an open-hearted demeanor are vital.
• The “MOMENT” Approach (Crowhurst, 2018):
  • Maximize each opportunity to meet the person’s needs tenderly.
  • Each moment can bring hope or challenge—care must be adaptable and compassionate.
• Who Benefits from this Approach:
  • Essential for carers, but also for anyone interacting with someone with severe ME (e.g., friends, family, social workers, healthcare professionals).
• Carer Qualities:
  • Compassionate, kind, loving, thoughtful, loyal, determined, passionate, committed, creative, and gentle.
  • They must remain mindful of their actions’ potential to trigger pain or symptoms.
• Key Insights for Carers:
  • ME is a neurological disease with no universal treatment or cure.
  • The carer’s attitudes and methods can profoundly impact the person’s wellbeing.
  • They should be informed, empathetic, and committed to creating a supportive environment.