Other Advocacy Information

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Hospital Booklet 2023: Information for Patients and Hospital Staff Regarding Treatment of Patients with M.E. (Myalgic Encephalomyelitis)

Key Points: About Myalgic Encephalomyelitis (M.E.) M.E. is a serious neurological disease causing widespread dysfunction in the immune, neurological, and cardiovascular systems. It is often triggered by infection and worsened by exercise, sensory overload, or stress. Recovery rates are low, with most patients facing long-term disability. Challenges in Hospital Care Noise and Light Sensitivity: Patients…

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Hospital Care for People with Severe and Very Severe ME

Key Points: Challenges of Hospital Care for Severe ME Patients Hospitals are often unsuitable environments for those with severe ME due to sensory sensitivities (noise, light, etc.) and lack of understanding about the condition. Experiences in hospitals can vary: while some report poor treatment, others note satisfactory care when appropriate adjustments are made. Recommendations for…

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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: 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….