ME/CFS Science Blog
Senior Member (Voting Rights)
This might warrant its own thread because it has a lot of info and advice that is not available in other formats.
I made this thread about it on social media:
1) There's a new document with care advice for patients with (very) severe ME/CFS.
It was published by the Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna.
2) There's a lack of evidence in this area so the document is mostly based on the (many years of) experience of carers.
They highlight that the care for severely affected is often counterintuitive. Communication, for example, must often be reduced to avoid over-exertion.
3) The document is full of practical advise such as on pacing and using fixed care times and routines to create a structure.
It discusses problems with eating, drinking, toileting, washing, dental care and offers tips and suggestions on how to manage these.
4) The guide talks about drinking cups that can be used while laying down, portable toilets, a threesided toothbrush, affordable rehydration solutions, customized earplugs, dimmable LED lights, ultra-light duvets, non-verbal communication, the risk of pressure ulcers, etc.
5) It also highlights the importance of empathy, security and respect for the affected patients because they are in situation where they are heavily dependent on others for even the most basic tasks like eating or going to the bathroom.
6) The document also gives advice to professional healthcare workers for example not to use parfums, limit communication, spread out tasks and consider that patients may overestimate their limits out of shame or consideration for others.
7) The documents advised to form a care team with all persons who perform care tasks such as feeding, washing, and personal hygiene. An extended circle of supporters can take on other tasks such as cooking or shopping.
8) The document was published in German and is available here:
Hermisson et al. Pflegeanleitung für schwer- und schwerstkranke ME/CFS-Patient:innen
https://mecfs.at/wp.../uploads/2025-8-Pflegeanleitung.pdf
Anil Van Der Zee has created an (unofficial) Google-translation to English:
https://x.com/AnilvanderZee/status/1954256994719740082
9) The document stresses that it is not a medical guideline but a practical collection of measures from the perspective of those affected and their caregivers.
It will be updated and they welcome suggestions, criticism, and more practical advice based on personal experience.
10) Hopefully this guide will be useful to patients and carers dealing with severe ME/CFS.
They are often left to manage the illness themselves with little help from outside.
