Vink & Vink-Niese (2026)
- Authors: Mark Vink, Alexandra Vink-Niese
- Institutes: Independent Researcher, Amsterdam, The Netherlands, Independent Researcher, Hannover, Germany
- Publisher: Journal of Clinical Medicine
- Link: DOI
Summary
This review validates the experiences of the most disabled ME/CFS patients, describing their condition as a ‘living death’ characterized by total physical collapse and isolation. It serves as a critical call for the medical community to recognize severe ME/CFS as a multisystem physiological crisis requiring specialized care, such as parenteral nutrition, and dedicated biomedical research focus to address life-threatening symptoms.
What was researched?
This comprehensive literature review examines the clinical profile, diagnostic challenges, and systemic impacts of severe and very severe Myalgic Encephalomyelitis (ME/CFS).
Why was it researched?
The authors aimed to highlight the ‘hidden’ population of patients who are too ill to leave their homes, noting that despite their extreme disability, only about 0.5% of research focuses on this subgroup.
How was it researched?
The study synthesizes existing biomedical research and international surveys, discussing diagnostic tools such as 2-day cardiopulmonary exercise testing and clinical manifestations across endocrine, immune, and neurological systems.
What has been found?
Key findings include the extreme nature of sensory hypersensitivity where even a soft voice can cause relapses, the prevalence of life-threatening malnutrition requiring tube feeding, and the high rate of ‘medical gaslighting’ due to a lack of awareness among physicians.
Discussion
The authors argue that ME/CFS is a profound physical disability rather than a psychological condition, criticizing the historical underfunding and the diagnostic pitfalls that often exclude the most severely ill from research.
Conclusion & Future Work
There is an urgent need for advanced, technology-driven biomedical research to identify disease mechanisms and find effective pharmacological treatments for the hundreds of thousands of severely affected individuals.