The challenges in diagnosing Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), are significant worldwide. International studies show that 84-90% of those affected are either not diagnosed at all or are misdiagnosed.
Germany: Here, it takes an average of six to seven years to receive a correct diagnosis.
Austria: In Austria, the average time between the onset of symptoms and diagnosis is five to eight years. For about 30% of those affected, it takes even more than ten years to receive a diagnosis.
Switzerland: In Switzerland, the average duration until diagnosis is nearly seven years. Patients have to consult more than eleven different doctors on average and receive about 2.6 misdiagnoses before the correct diagnosis is made.
These long diagnosis times are problematic because they delay access to appropriate treatment and support measures, which can significantly impact the quality of life of those affected. It also highlights the need for better diagnostic tools to shorten diagnosis times and prevent misdiagnoses.
However, no specific and practical biomarker for the disease has been identified so far. This could be due to the fact that those affected are often not adequately characterized and stratified. For example, a study from Austria showed that people with ME/CFS and immune deficiencies had different potential markers than those without an additional immune deficiency.
Similar to Long Covid, finger sweat analysis can potentially help improving the diagnosis of ME/CFS.
Reference: Wien Klin Wochenschr (2024) 136 (Suppl 5):S103–S123
https://doi.org/10.1007/s00508-024-02372-y
Interdisciplinary, Collaborative D-A-CH Consensus Statement on the Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(“D-A-CH” refers to the German-speaking countries Germany (D), Austria (A), and Switzerland (CH).)