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 require quiet and dimly lit environments due to hypersensitivity.
• Chemical and Drug Sensitivity: Medications and chemicals, including anesthetics, can cause severe reactions.
• Sleep Disturbances: Patients need undisturbed rest to recover effectively.
• Post-Exertional Malaise: Activities, including post-surgery physiotherapy, can trigger severe relapses.

Best Practices for Hospital Staff

1. Provide a private, low-stimulus room to minimize sensory overload.
2. Avoid procedures or treatments that force exercise (e.g., Graded Exercise Therapy is contraindicated).
3. Use minimal and tailored medication, avoiding preservatives and allergens.
4. Ensure thorough pre-surgery assessments for respiratory and cardiac health.
5. Offer specialized post-surgery care, as recovery is often slower and more complex.

Dietary Needs

• Patients may require specialized diets free from preservatives and allergens.
• Tube feeding is sometimes necessary for those with severe symptoms.

Updated Guidelines

• NICE guidelines [NG206] (2021): Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are no longer recommended as treatments or cures for M.E.

This booklet is a crucial resource for ensuring proper care for individuals with M.E. in hospital settings. Let me know if you’d like help formatting this for a specific purpose!