Spontaneity and humanity are the spells of death for ME/CFS patients. We must become robots or we wither and die.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem disease with a complex, mostly permanent pathology, and a high number of those affected  .
The illness has different levels of severity, and often leads to a high degree of physical disability, cognitive impairment, and lowered quality of life. In it’s severest form, those affected are often completely isolated from any stimuli or external impressions, and are completely ignored by society and research . The WHO has classified ME/CFS as a neurological condition since 1969  .
The Austrian society for ME/CFS report describes the characteristics of the disease as “‘all-encompassing’ physical and mental fatigue and weakness that is not relieved by rest. […] Another major symptom is post-exertional malaise (PEM) after physical or mental exertion, which can last for days or even several weeks. Even simple everyday activities may be difficult and lead to worsening of symptoms    ”. Those most severely affected may experience this from speaking, eating, or just by being around another person in the same room .
Other symptoms include pronounced pain, neurocognitive disorders, dysautonomia/POTS, neuropathies, greatly increased sensitivity to stimuli, and immune system disorders with flu-like symptoms  .
Because ME/CFS is often triggered by an infection, it is currently being discussed and research in connection with chronic/long Covid, and as a long-term consequence of Covid  .
Both illnesses often share similar main symptoms — however, there is currently no cure or medical treatment  . There are only symptomatic treatment options for the most common comorbidities such as dysautonomia, immune deficiencies, and mast cell disease. There desperately needs to be more research, recognition, and protection for those affected who receive little support from health and welfare systems .
ME/CFS is not a rare illness.
There are at least 25,000 affected by it in Austria, based on a conservative estimate of prevalence among 0.3% of the population. Other calculations assume a higher number of cases of up to 80,000 people  . There are 17–20 million people affected globally. Prevalence in the world population is 0.89%. This is why those affected often use the phrase/hashtag #millionsmissing on social media.
The illness affects all age groups, including children. Two thirds of those affected are women. 70% of ME/CFS sufferers are unable to work, approx. 25% are severely affected and house- or bedbound  .
ME/CFS is one of the most functionally limiting and simultaneously debilitating chronic diseases. Quality of life is even lower than for people with cancer or strokes  . The physical and mental limitations are enormous compared to other illnesses (e.g. lung disease, depression, diabetes). The emotional burden placed upon family carers is comparatively high .
There are currently no outpatient contact centres or emergency facilities for ME/CFS in Austria .
ME/CFS is not a mental illness. The trigger is assumed to be a combination of genetics and environmental factors, e.g. infections (EBV, Covid ), surgery, trauma, giving birth, or allergic reactions. It may also start gradually   .
The most common misdiagnoses include depression, burnout, somatoform disorder, and neurasthenia . Research also confirms that some therapeutic approaches, such as exercise, can be particularly damaging .
When cause of death for people with ME/CFS is compared with that of the rest of the population (data based on the USA), we can see a higher overall mortality rate: 55.8 vs 73.5 years old, we well as a lower average age for suicide: 41.3 vs 47.4 years old . Although rare, it is possible to die from ME/CFS . ME/CFS is rarely included on death certificates. In general, statistics and the definition of cause of death differ greatly, mainly due to the presence of comorbidities and regional differences .
List of references:
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