Ahead of this Severe ME Day — August 8th — the World ME Alliance is proud to launch a vital new publication:
Supporting People with Severe and Very Severe ME/CFS:
A Resource Guide for Clinicians
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 from the World ME Alliance, available in both English and French, 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.
Through this concise and practical document our goal is to help give voice and agency back to those who are often left unseen and underserved by healthcare systems.
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.
Urgent care principles and the best global guidelines
This resource provides links to global best-practice guidelines from NICE, CDC, Bateman Horne Center, Mayo Clinic, and others — all in one accessible place.
It also includes a concise one-page summary of Severe and Very Severe ME/CFS, along with essential urgent care principles for supporting this patient population.
Shared in Solidarity
This publication has been created by the World ME Alliance in partnership with the Severe ME Advocacy Group, to serve those amongst us enduring the most profound suffering. It speaks with the authority of both lived experience and clinical expertise, and demands dignity, safety, and justice in care.
Please download, read, and share this guide with healthcare professionals in your network.
On Severe ME Day, we remember the millions of people living in darkness. This resource is for them.
