Saugstad et al. (2025)
- Authors: Ola Didrik Saugstad, Mari Gamme Sollie, Harald Andre Torp, Dag Gundersen Storla.
- Institutes: Røysumtunet, Gran, Norway; Department of Pediatric Research, Institute for Clinical Medicine, University of Oslo, Oslo, Norway.
- Publisher: Fatigue: Biomedicine, Health & Behavior
- Link: DOI
Summary
This study provides important evidence that a dedicated inpatient care model can lead to meaningful clinical improvement for some of the most severely ill ME/CFS patients. The findings suggest that providing a safe, low-stress environment where PEM is carefully managed is a powerful intervention in itself. The fact that patients with a shorter disease duration were more likely to improve underscores the potential importance of early diagnosis and supportive care. While the unit offered an optional supportive therapy program with various supplements and low-dose medications, their specific contribution to the positive outcomes remains unknown and requires further research.
What was researched?
This study reports on the clinical outcomes from the first three years of a new, specialised inpatient care unit in Norway designed specifically for severely and very severely ill ME/CFS patients. The primary goal was to evaluate whether this dedicated care model led to any improvements in patient health.
Why was it researched?
Prior to this initiative, no adapted care services existed in Norway for the most severely affected ME/CFS patients. The Norwegian ME Association and Røysumtunet, a private institution, collaborated to establish a unit that could provide a safe, respectful, and low-stimulation environment for this vulnerable population, aiming to offer proper care and recognition for their disease.
How was it researched?
This was a retrospective review of medical records from the Røysumtunet ME unit. The study included 24 patients (20 women, 4 men) diagnosed with severe or very severe ME/CFS who stayed at the facility for at least three months between June 2021 and June 2024. The main outcome was the change in disease severity, as assessed by the attending physician according to the UK NICE guidelines. As part of the care model, patients were also offered an optional, four-step supportive therapy program that included high-dose thiamine 💊, NADH 💊, Coenzyme Q10 💊, vitamin B12 💊, low-dose naltrexone 💊, and low-dose aripiprazole 💊, although the specific effects of this program were not analyzed in this study.
What has been found?
A total of 50% (12 out of 24) of the patients showed improvement during their stay. Seven patients (29.2%) experienced a “significant improvement” by moving up one or two levels on the NICE severity scale (e.g., from very severe to severe). An additional five patients (20.8%) showed “some improvement” within their severity level, such as better tolerance for sensory inputs or increased ability to perform small daily tasks. Improvement was significantly correlated with a shorter duration of illness (a mean of 2.3 years for improvers vs. 6.7 years for non-improvers).
Discussion
The authors found the results encouraging, especially since the unit’s primary purpose was care, not curative therapy. They hypothesize that the observed improvements stemmed from being in a safe, secure environment with individualized care that minimized Post-Exertional Malaise (PEM) and reduced daily stress. The study’s limitations include a small sample size, the difficulty of collecting systematic data from extremely ill patients, and the inability to draw conclusions about the effects of the supplemental therapies that some patients used.
Conclusion & Future Work
The authors conclude that a specialized care environment offering respect, understanding, and a focus on minimizing PEM can be beneficial for severely and very severely affected ME/CFS patients. They highlight a significant need for more such facilities in Norway and elsewhere. Future work should include systematic, international studies to investigate the specific factors contributing to improvement and to formally test potential therapeutic interventions.