Transdisciplinary Expert Statement: care guide for people severely affected by ME/CFS in home-based care, 2026, Hermisson et al

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

Hermisson, Joachim; Schreiner, Claudia; Weichselbaumer, Stefanie; Werner, Marlene; Hackl, Verena; Roth, Jacob; Leiss, Sandra; Maukner, Anna Christina; Wojczewski, Silvia; Hainzl, Astrid; Hermisson, Sabine; Thonhofer, Kevin; Pleschberger, Sabine; Hoffmann, Kathryn

Background
Many of those affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have significant care needs. However, post-exertional malaise, the defining feature of ME/CFS, means that even minor physical, orthostatic, cognitive, or sensory stressors can trigger a disproportionate worsening of health status, condition and symptoms. This results in specific requirements and significant challenges in home care.

Nursing care is still provided predominantly by family caregivers, who frequently lack adequate assistance and support. At the same time, there are significant gaps in knowledge, care infrastructure, and professional guidance for the nursing and healthcare professionals, as well as physicians, involved in providing care.

Objective
The objective of this guide is to structure care measures in a way that prevents overexertion and promotes stability.

Methods
The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of those affected and family caregivers. These were professionally categorized and further developed by experts in nursing science, physical therapy, general practice and public health.

Results
The guide describes how to adjust key dimensions of care — from nutrition and personal hygiene to communication and managing emotional stress — to disease-specific exertion thresholds.

Additionally, requirements for the caregiving relationship and the planning of home visits are outlined and the possibilities of palliative care principles are discussed.

Web | DOI | PDF | Wiener Medizinische Wochenschrift | Open Access | Full Text in German
 
Anil about ME Facebook page:

This paper provides the a structured, transdisciplinary care guide for people with severe ME in home settings.

The guide fills a major gap in professional knowledge and supports both family caregivers and health professionals in delivering safe, stabilizing care for people with severe ME.

Great work. Thank you!

PS: I Google translated the document to English. The original German version can be found here: https://drive.google.com/drive/folders/1L4GhghirzZSzOCNzDCRVyjqE-L66Ixvp

[English translation is at link also]
 
I’m only able to see an auto-translated version.

There are some very good points about how pacing isn’t meant to produce improvements and how you have to allow for some spare capacity if possible for quality of life and independence.

They also emphasise that shielding isn’t just being kind, it’s needed.

The auto translate talks a lot about «stress», which might not be a good word to use.

The text over-states the knowledge about why PEM or symptoms happen.

They talk about trying to reach «stability», but that’s sometimes not possible. Some people just fluctuate or deteriorate regardless of what you do.

There’s some talk about POTS (but mostly OI which is fine), but also some talk about MCAS and hEDS.

I haven’t look much beyond the headlines from section 4 and 5, which gets into the practicalities.

I think this can be a very useful reference if they revise it and remove the unevidenced explanations and the talk about MCAS and hEDS. It’s clear that people with an understanding of the needs of the more severe have been involved, but I fear that the memes will subtract from the credibility of the document.
 
Utsikt said:
I think this can be a very useful reference if they revise it and remove the unevidenced explanations and the talk about MCAS and hEDS.
Click to expand...

Even if they were correct, they'd be superfluous in a care guide. It should describe the person's needs, not why they have them.

If a guide says X or Y need to be avoided because they aggravate the person's illness, that should be accepted. It doesn't need to be justified.
 
Kitty said:
Even if they were correct, they'd be superfluous in a care guide. It should describe the person's needs, not why they have them.

If a guide says X or Y need to be avoided because they aggravate the person's illness, that should be accepted. It doesn't need to be justified.
Click to expand...
Ideally a justification is beneficial when the advice goes against the norm (even if the norm is unevidenced), but the next best thing would be to just admit that this is how it is even though we don’t know why.
 
Utsikt said:
Ideally a justification is beneficial when the advice goes against the norm
Click to expand...

Maybe, but I see it as a status issue.

Carers and PAs are disabled people's employees, not their friends, and any employer who allows their status to be eroded risks handing over significant control. Employees have a right to the information necessary to do their jobs and ensure their safety, of course, but they don't have an automatic right to all information. Even a need for the most intimate care doesn't change the basis of the relationship.

I observed employer/PA interactions over decades of working alongside disabled people, and soon came to understand how important it is to mark out and observe professional boundaries. Control of information is one of them.
 
The official English version has been published:

Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement, 2026, Hermisson et al.

Hermisson, Joachim; Schreiner, Claudia; Weichselbaumer, Stefanie; Werner, Marlene; Hackl, Verena; Roth, Jacob; Leiss, Sandra; Maukner, Anna Christina; Wojczewski, Silvia; Hainzl, Astrid; Hermisson, Sabine; Thonhofer, Kevin; Pleschberger, Sabine; Hoffmann, Kathryn

Abstract​

Background​

Many patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have significant care needs. However, post-exertional malaise—the defining feature of ME/CFS—means that even minor physical, orthostatic, cognitive, or sensory stressors can trigger a disproportionate worsening of symptoms.
This results in specific requirements and significant challenges in home care.
Care is still provided predominantly by family caregivers, who frequently lack adequate assistance and support.
At the same time, there are significant gaps in knowledge, care infrastructure, and professional guidance for nurses and other healthcare professionals, as well as physicians involved in providing care.

Objective​

The objective of this guide is to structure care measures in a way that prevents overexertion and promotes stability.

Methods​

The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of patients and family caregivers.
These were professionally categorized and further developed by experts in nursing science, physical therapy, general medicine and public health.

Results​

The guide describes how to adapt key dimensions of care—from nutrition and personal hygiene to communication and managing emotional stress—to disease-specific exertion thresholds.
Additionally, it outlines requirements for the caregiving relationship and the planning of home visits and discusses the application of palliative care principles.


Web | DOI | PDF | Wiener Medizinische Wochenschrift | Open Access
 
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