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.
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Categories: Carers Guidance & Resources