Renz-Polster et al. (2024)
- Authors: Dr. Herbert Renz-Polster, Dr. Monika Dräger and the team of the Deutsche Gesellschaft für ME/CFS e. V.
- Institutes: Deutsche Gesellschaft für ME/CFS e. V., Charité Fatigue Centrum der Charité Berlin.
- Publisher: Deutsche Gesellschaft für ME/CFS e. V.
- Link: Source Document
Summary
This comprehensive guide provides German-speaking clinicians with a crucial, evidence-based framework for diagnosing and managing ME/CFS, which could significantly reduce diagnostic delays and prevent harmful treatments for patients. For patients, this document serves as an important validation of their illness as a severe, physical condition and outlines a management approach focused on stabilization and symptom control, particularly the avoidance of Post-Exertional Malaise (PEM) through Pacing. The guide’s detailed discussion of symptomatic off-label treatments and the management of common comorbidities like POTS and MCAS offers practical pathways for improving patients’ quality of life while awaiting the development of curative therapies.
What was researched?
This document is a comprehensive clinical practice guide for general practitioners on the diagnosis and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). It synthesizes the current scientific understanding of the disease, including its pathophysiology, symptomatology, diagnostic criteria, and therapeutic approaches, with a specific focus on ME/CFS following any trigger, including SARS-CoV-2 infection.
Why was it researched?
This guide was created to address the significant deficit in medical knowledge and the resulting inadequate care for ME/CFS patients in Germany, where diagnostic delays average 6-7 years. It aims to provide clinicians with an evidence-based, practical tool to correctly diagnose and manage this complex, severe neuroimmunological disease (ICD-10 G93.3), especially given the increasing number of patients since the COVID-19 pandemic, with 10-20% of Post-COVID Syndrome (PCS) patients developing ME/CFS.
How was it researched?
This document is a clinical guideline based on a comprehensive review of existing scientific literature, international diagnostic criteria (IOM, CCC), and established medical guidelines (e.g., NICE Guideline 2021). It consolidates expert consensus and evidence into a structured format for practical use in a clinical setting, rather than presenting new primary research from a specific patient cohort. The guide covers pathophysiology, epidemiology, diagnostic procedures, symptom management, and socio-medical support.
What has been found?
The guide establishes ME/CFS as a severe, chronic, multi-systemic disease characterized by pathomechanisms including dysregulation of the immune and autonomic nervous systems, mitochondrial dysfunction, and endothelial dysfunction. The cardinal symptom is Post-Exertional Malaise (PEM), a pathological worsening of symptoms after minimal physical, cognitive, or emotional exertion. The guide provides detailed outlines of the multi-faceted symptoms (neurological, immunological, autonomic, neuroendocrine), diagnostic procedures, and common comorbidities such as Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Small-Fiber Neuropathy (SFN).
Discussion
The authors emphasize that ME/CFS is a biological, not a psychogenic, illness and that outdated concepts like Graded Exercise Therapy (GET) are contraindicated and harmful, often leading to severe and permanent deterioration. The guide highlights the immense disease burden, with quality of life often lower than in conditions like MS or stroke, and the significant stigmatization patients face in the healthcare system. The lack of a curative therapy or specific biomarkers is a major limitation, making diagnosis dependent on clinical criteria and exclusion of other conditions.
Conclusion & Future Work
The authors conclude that management of ME/CFS must be centered on three pillars: 1) Energy management (Pacing) to prevent PEM, 2) symptomatic therapy to alleviate the most burdensome symptoms, and 3) diagnosis and treatment of comorbidities. They recommend several off-label medications for symptom control, including Pyridostigmin 💊 (Mestinon®), Low-Dose Naltrexone 💊 (LDN), and Low-Dose Aripiprazol 💊 (LDA). The guide implicitly calls for increased research to identify biomarkers and develop targeted treatments, as well as for improved education and specialized care structures within the healthcare system.