Diagnostics

Medical professionals in Germany for ME/CFS

ME/CFS is a complex clinical picture that can be accompanied by various symptoms. Particularly characteristic is post-exertional malaise (PEM), i.e. delayed exercise intolerance. In addition to PEM, sufferers often experience severe fatigue and other symptoms such as sleep disorders, pain, difficulty concentrating or circulatory problems.

Charité questionnaire for diagnosing ME/CFS (CCC)

ME/CFS is a complex disease with no generally accepted specific biomarkers, whose diagnosis is based on clinical criteria and the exclusion of other diseases. The core symptom is post-exertional malaise (PEM). The Canadian consensus criteria, international consensus criteria and IOM criteria offer different approaches to diagnosis. The severity is assessed using questionnaires and physical measurements such as the Bell Scale and handgrip strength measurement. The exclusion and treatment of comorbidities are also important.

The diagnosis is often difficult and can take several years. Many patients need to visit numerous doctors before the diagnosis is confirmed. This is partly due to the fact that

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ME/CFS plays a minor role in medical training and is therefore unknown to many doctors. Unfortunately, inappropriate therapies waste valuable time, which can worsen symptoms and the prognosis.

Detailed medical history

Physical examination and laboratory tests

The 2003 "Canadian Definition" has become internationally accepted as the basis for ME/CFS research and clinical diagnosis. This definition scheme can be used to clinically confirm a diagnosis of ME/CFS (e.g. using the Charité Fatigue Centre questionnaire). The Canadian Consensus Document defines ME/CFS according to the following criteria:

Exhaustion, fatigue and tiredness are symptoms that cannot be clearly attributed to any specific illness. In addition, the colloquial use of these terms makes them difficult to distinguish during the anamnesis interview. Diagnosis can therefore be challenging and involves not only psychiatric but also somatic differential diagnoses.

In addition to the main characteristics of ME/CFS, such as PEM and chronic fatigue, many sufferers also experience various comorbidities. These additional conditions can exacerbate the symptoms of ME/CFS and complicate diagnosis and treatment. The most common comorbidities include postural orthostatic tachycardia syndrome (POTS), small fibre neuropathy (SFN), mast cell activation syndrome (MCAS) and Ehlers-Danlos syndrome (EDS).

Doctors are unfamiliar with the disease and therefore misdiagnose it," says Professor Scheibenbogen. In fact, according to the IQWiG status report, ME/CFS is not explicitly included in the catalogue of medical learning objectives. Although the disease is now mentioned in guidelines, for example in the S1 guideline on long/post-COVID, there is no German-language guideline specifically for ME/CFS. "Instead of the correct diagnosis, neurotic, stress-related and somatoform disorders are then incorrectly diagnosed," says Scheibenbogen.

ME/CFS is often accompanied by other conditions. Early detection and possible treatment can improve the health and quality of life of those affected by ME/CFS.

Chronic fatigue syndrome (CFS) is an often severe illness that, in addition to fatigue, is accompanied by varying degrees of physical and neurocognitive symptoms. ME/CFS can be described as a "neglected disease" because, although ME/CFS is relatively common, it is not diagnosed in many of those affected. According to estimates by the US Centres for Disease Control and Prevention (CDC), over 4 million people in the US alone are directly affected by CFS. In Germany, a 1993 study by the Federal Ministry of Health estimates a prevalence of 0.3%. The WHO has classified CFS as a disease of the nervous system, and the ICD also lists CFS as a neurological disease under G93.3.

Comorbidities are accompanying illnesses that can occur alongside chronic fatigue syndrome (ME/CFS). Adequate treatment of these comorbidities can improve patients' health.

In addition to significant overlaps in symptoms in adults, such as severe fatigue and concentration problems, there are also characteristic differences. This applies in particular to post-exertional malaise (PEM), i.e. the worsening of all symptoms due to physical, mental or emotional overexertion.

This self-test is based on the Canadian Consensus Criteria, an internationally recognised scheme for the clinical diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It is important to understand that this test is not a substitute for a medical diagnosis by a professional. Instead, it is intended as a tool to help identify possible symptoms of ME/CFS and to understand whether further medical evaluation may be appropriate.

ME/CFS has been officially recognised as a neurological disorder for more than 50 years and is considered the most severe form of long COVID – yet it remains highly controversial in neurology, of all fields. In this interview, Charité professor Harald Prüß explains where his professional association stands and when those affected can hope for treatments.

FUNCAP is a tool developed by a team of researchers specifically to assess functional capacity in ME. It can be used not only to accurately indicate the severity of ME, but also to track the course of the disease. It is therefore suitable for clinical diagnosis, tracking the course of the disease and assessing eligibility for disability benefits.

This self-test is based on the Canadian Consensus Criteria, an internationally recognized scheme for the clinical diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It is important to understand that this test is not a substitute for a medical diagnosis by a healthcare professional. Instead, it is intended as a tool to help identify possible symptoms of ME/CFS and to understand whether further medical evaluation may be appropriate.

ME/CFS is characterised by dysregulation of the central and autonomic nervous systems, the immune system and metabolism. For those affected, this means severely limited performance and severe fatigue (exhaustion) that does not subside even after rest.

ME/CFS is a neuroimmunological disorder that can occur at any age. Those affected can be impacted by the disorder to varying degrees. In some cases, sufferers are unable to leave their homes or are bedridden.