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There are around 250,000 people affected in Germany. ME/CFS is most common between the ages of 11-19 and 30-30. Women are affected about twice as often as men. Worldwide, the prevalence is assumed to be around 1%. This means that around 70-80 million people worldwide suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, an estimated 84 to 91 percent of patients are undiagnosed. At least 25% of patients are bedridden or housebound and up to 75% can no longer work or attend school.In around 50% of cases, the disease occurs acutely after an infectious disease.
Other triggers include, for example
- operations
- pregnancy
- psychosocial stress
- trauma
Possible viral triggers, including Epstein-Barr virus (Pfeiffer's glandular fever), cytomegalovirus, human herpes viruses.
How does ME/CFS develop?
The origins and triggers of chronic fatigue syndrome (ME/CFS) have not yet been conclusively researched. Nevertheless, there are various scientific approaches to the origin of the disease.There are 3 hypotheses on the origin of the disease:
- Chronic infection
As the disease so often occurs after a viral infection, many researchers assume that the viruses survive within the body, triggering chronic inflammation. The fact that viruses remain in the body and trigger symptoms at a later stage is not a new phenomenon. For example, herpes viruses can trigger shingles years after infection, even though no symptoms have appeared in the meantime.
- Mitochondrial disorder
Mitochondria are found in all our cells and are, so to speak, the cells' energy suppliers. The viral infection leads to a change in the metabolism of the mitrochondria. The mitochondria no longer function properly and can no longer convert sugar into energy. If the muscles now have to work without having sufficient energy available, this quickly leads to severe exhaustion.
- Autoimmune disease
An existing immunodeficiency means that the body cannot completely destroy the virus in the event of an infection. The result is an existing autoimmune reaction.
What are the symptoms of ME/CFS?
The symptoms of ME/CFS are varied. However, the main symptoms are chronic fatigue with post-exertional malaise (or PEM, crashes), sleep disorders, cognitive difficulties and pain.The three main symptoms of ME/CFS are
- chronic fatigue (lasting longer than 6 months),
- sleep problems and
- post-exertional malaise, or PEM for short or crash
In PEM, physical and mental activity can lead to complete exhaustion and worsening of other symptoms after a few hours or days. This phenomenon is often referred to as a crash, as it results in severely restricted performance in everyday life.
In addition, the following symptoms can occur to varying degrees:
- Neurocognitive symptoms (“brain fog”)
- Memory disorders
- Concentration disorders
- Word-finding disorders
- Disorientation
- Pain
- Muscle and joint pain without local signs of inflammation
- Headaches
- Orthostasis intolerance (circulatory problems when standing up)
- Neurological symptoms: Hypersensitivity to stimuli such as light or sound
- Immunological symptoms, e.g. new allergies or food intolerances
- Weight gain or loss
- Psychiatric symptoms such as anxiety, emotional instability and depressive symptoms
Due to the diverse symptoms, this list only covers the most common complaints and does not claim to be exhaustive.
Incidentally, symptoms similar to those of ME/CFS are also frequently observed in the context of Long Covid. Researchers therefore suspect a similar origin of Long Covid and ME/CFS.
Diagnosis of exclusion
As no biomarker is yet known, ME/CFS is a clinical diagnosis of exclusion: if no organic or psychiatric cause can be identified for the above symptoms, a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome is possible. This can mean a long ordeal for patients, as they first have to undergo a wide range of examinations. In addition, many patients encounter a lack of understanding from the doctors treating them. As there are no suitable diagnostic tests yet, the doctors treating them are unable to find a physical cause. This can lead to the patient's symptoms not being taken seriously.Diseases that have similar symptoms and should therefore be clarified before a diagnosis of ME/CFS is made are e.g:
- Anemia, malignancy or infection
- depression
- Electrolyte deficiency
- Diabetes or malnutrition
- Hyper- or hypothyroidism
- Iron deficiency
- Liver dysfunction
- Renal dysfunction
There are clinical diagnostic criteria according to which the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome is made. The most recent criteria were established in 2015 by the Institute of Medicine of the National Academies. The diagnostic criteria that must be met for a diagnosis of ME/CFS are
- a significant limitation or inability to participate in work, social life, personal activities or education. These symptoms persist for at least 6 months and are accompanied by (often severe) fatigue. These symptoms are new onset or not congenital, are not the result of excessive activity and cannot be significantly alleviated by rest.
- post-exertional malaise (pronounced and persistent intensification of all symptoms after minor physical or mental exertion) and
- non-restorative sleep
One of the following symptoms is also necessary for the diagnosis:
- cognitive problems
- orthostatic intolerance (circulatory problems when standing up)
Therapy for ME/CFS
To cut a long story short: There is no proven therapy for ME/CFS. There are no medications that help to reduce fatigue. Basically, therapy is symptom-oriented, i.e. painkillers are administered for pain, etc..The most important therapy goal is the avoidance of post-exertional malaise (PEM), i.e. crashes. The concept of pacing has proven to be helpful here. Patients learn to manage their energy according to their individual stress limits.
