Severe and very severe ME/CFS - useful resources for clinicians and carers

[Trish]

Severe and very severe ME/CFS

A thread to collect links to useful resources and the threads about them. Please go to the linked thread if you want to discuss a particular resource.

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Montoya,Chu, Dimmock,Mooney, Dowell
Article | Thread

Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)
Article | Thread

 

[Trish]

Preventing avoidable malnutrition in severe ME/CFS (Helen Baxter, 25% ME group)
Video | Thread

 

[ME/CFS Science Blog]

Hermisson et al. Pflegeanleitung für schwer- und schwerstkranke ME/CFS-Patient:innen
Resource for severe ME/CFS in German (including automatic translation in English)
Document | Thread

 

[ahimsa]

Blog post from Bateman Horne Center (much of the information is specific to the US).

How to Be a Demanding Diplomat as a Severe ME/CFS Caregiver
Blog Post | Thread

 

[Chandelier]

Transdisciplinary Expert Statement: care guide for people severely affected by ME/CFS in home-based care in German
Document | Thread

 

[Chandelier]

Stonebird Books about Severe ME/CFS - Greg & Linda Crowhurst
Thread | Website

The available books (all free):

NOTES FOR CARERS : I wanted to make a beautiful, easily accessible, informative guide, it includes contributions from Kara Jane Spencer and Merryn Croft, much loved and much missed.

MORE NOTES FOR CARERS : This is our most comprehensive, in-depth guide.

CARE FOR ME: This pocketbook guide sets out to gently and tenderly show how you can grow and learn as a carer and look after yourself too.