Supporting People with ME/CFS in Hospital

Purpose:

The pack aims to assist individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and their carers in advocating for reasonable adjustments and appropriate care in hospital settings.

Key Sections and Highlights:

1. Introductory Letter for Healthcare Professionals:
   • Explains the complexity and variability of ME/CFS.
   • Emphasizes the need for individualized, reasonable adjustments based on NICE [NG206] guidelines.
2. Key Considerations:
   • Outpatient Visits:
     • Flexible appointment options (e.g., video calls).
     • Low-stimulus environments and clear transport arrangements.
     • Avoid penalizing missed appointments; offer home visits and other support.
   • Inpatient Care:
     • Continuity of care with a named nurse.
     • Low-stimulus environments (quiet, dark, odor-free spaces).
     • Allow extensive rest, minimize movement, and provide support for basic needs.
     • Engage family or carers as advocates and support during care.
3. Medication and Nutrition:
   • Start medications at low doses; monitor for sensitivities.
   • Address dietary restrictions; fresh, additive-free food is often needed.
   • Recognize risks of malnutrition and involve dietitians early.
   • Tube feeding may be necessary for severe cases.
4. Additional Tools:
   • Includes templates for signage to inform staff about specific patient needs (e.g., “Keep this room dark and quiet”).
5. Resources:
   • Contact information for key organizations like 25% ME Group, Action for M.E., BRAME, and The ME Association for further support.

This document is an essential guide for ensuring that hospital care aligns with the unique needs of individuals with ME/CFS. Let me know if you’d like further refinements or details!