#SevereMEday 2024

WAMES calls for safe hospital care for severe ME in Wales

On #SevereMEday,  8 August 2024, WAMES is asking the NHS in Wales to ensure they can treat patients with ME, and particularly those with severe ME, appropriately and safely.

To highlight what this means, WAMES is sending the NHS and hospitals a  copy of the WMEA Best practice guidelines, which can be used in conjuction with the NICE guidelines section 1.17: Care for people with severe or very severe ME/CFS

Best practice includes: 

1. LISTEN to ME: people with ME, carers and specialists
2. EDUCATE HEALTHCARE STAFF: about ME and discredited  treatments.
3. ALLOW ADVOCATES: to stay and speak for patients  to speak on their behalf.
4. SAFEGUARD REST: and eliminate all non-essential interaction around the patient.
5. ENSURE A LOW-STIMULUS ENVIRONMENT: Minimise sound, light, temperature, chemical or fragrance smells, sensory overload and physical contact.
6. SUPPORT NUTRITIONAL CARE: Allow special diet foods, flexible meal times and adjusted feeding positions. Initiate IV hydration, oral nutrition support, enteral tube feeding or parenteral nutrition where appropriate.
7. ENABLE MEDICATION MANAGEMENT: To avoid adverse reactions to drugs start medications one at a time and taper up slowly from a fraction of normal dose.
8. RESPECT REASONABLE ADJUSTMENTS: dark glasses, headphones or earplugs/ ear defenders, eye-masks, flat beds etc.
9. PRIORITISE COMMUNICATION:  If patients can tolerate conversation, speak slowly and quietly; provide additional time for them to process information.
10. BELIEVE ME: Severe ME has a much lower quality of life than cancer, stroke, MS and chronic renal failure. Patients should be treated with respect, their physiological disease recognised, and their symptoms addressed.

Download the full document:

Safer hospital care for Severe ME: information for health providers

See also: Hospital mistreatment of Severe ME patients globally #SevereMEday