Supporting people with severe & very severe ME

 

WAMES and the World ME Alliance are offering a key resource for Severe ME day on 8 August 2025

Supporting people with severe & very severe ME: a resource guide for clinicians – read

All over the world, Severe ME patients struggle to get the medical care they need. Too often they are recommended inappropriate psychiatric hospitalisation and dangerous treatments such as Graded Exercise Therapy, while at the same time being denied vital interventions such as intravenous hydration or tube feeding.

This resource is  intended for use in crisis situations

This resource is intended for use in crisis situations — particularly when hospitalisation is being considered — and can be handed to clinicians and healthcare providers by patients or carers. It is designed to support self-advocacy when people with Severe ME may be too unwell to speak for themselves, and to guide healthcare professionals toward safer, more appropriate care.

Why This Guide Matters

Around 25% of people with ME/CFS are housebound or bedbound. Those most severely affected may:

  • Be unable to speak or tolerate light, sound, touch, or movement
  • Rely on assistance for feeding, toileting, and hygiene
  • Require care at home or via telehealth, as hospitalisation can be harmful
  • Experience life-threatening complications like malnutrition

Despite this extreme level of disability, many healthcare providers are unaware of how to meet their needs safely. This guide begins to fill that gap.

Please download, read, and share this guide with healthcare professionals in your network. More information and version here

On Severe ME Day, we remember the millions of people living in darkness. This resource is for them.

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