Melanie Schickedanz suffers from chronic fatigue syndrome. The most common prejudice: The woman is not in control.
Already during the infusion that I received in 2004 after a sudden hearing loss, I felt strange. Hardly at home, I vomited and my temperature rose to almost 40 degrees. Although I recovered in the next few days something, my strength continued to decline.
After a year I could not work anymore and was on sick leave. But hardly a doctor took me seriously. The health insurance company pressured me with weekly calls to return to work. As soon as I was able to walk a few steps again, thanks to a naturopath, I returned to my office full time. Although I only commuted between work and bed, the total physical breakdown came a few months later. In the end, I was barely able to lift a full folder out of the office cabinet.
Again I was sent from doctor to doctor. The one imputed to me to be lazy, the other, I would imagine everything. A doctor told me to find a husband so that I would have a proper sex life.
Only in 2008 it became clear what I was missing: The infusion ME had broken out.
What is ME?
ME stands for the disease “myalgic encephalomyelitis”, which is also referred to by the trivializing and misleading name CFS (Chronic Fatigue Syndrome / chronic fatigue syndrome). With 300,000 people affected in Germany (17 million worldwide), we have more ME patients than HIV or MS patients.
Since 1969, ME has been classified by the WHO as a central nervous system disorder and is diagnosed by exclusion diagnostics. Nevertheless, I have to pay for the examinations for exclusion diagnostics, the costs for ME-relevant blood tests as well as dietary supplements. To date, my costs are in the five-digit range.
What ME does with you
The effects of ME are devastating. A key feature is the indescribable physical weakness, a serious malady as well as the deterioration of state after physical and mental effort. There are also gastrointestinal problems, swollen and aching lymph nodes, throat infections, susceptibility to infection, pain in the whole body, heart problems.
The consequences of ME can be deadly.
The limitations range from a difficult daily routine to complete bed rest in the darkened room with loss of speech and artificial nutrition. It often happens that several people in a family fall ill. ME also meets children and adolescents.
A Danish study, which determined the quality of life of sick people, showed that ME patients have the lowest quality of life. There is no clinic and nursing home in Germany that are equipped for patients with severe ME. A hospital stay worsens the condition because it is too exhausting.
After relief, the disillusionment came
After the first relief, finally knowing what I have and the hope that I can be helped, the disillusionment followed: ME is incurable and there is no standard therapy. We also do not have basic medical care. Germany does not award research grants for ME.
In addition, the sufferers fall through the social grid. One is forced to fight for recognition of incapacity and physical limitations – often unsuccessfully, with the result that the state of health continues to deteriorate as a result of the overexertion.
Myalgic Encephalomyelitis for Chronic Fatigue Syndrome
A fatigue syndrome is a concomitant of many diseases. Since ME is often referred to as a “chronic fatigue syndrome”, this leads to confusion: the disease is mistakenly called in the same breath with burnout, depression, overwork and mental disorders.
In order to receive the diagnosis ME, mental illness as the cause must be excluded. Countless studies have clearly demonstrated that ME is based on a physical cause.
Three false statements come up again and again when it comes to ME:
The organism of those affected is no longer able to generate energy. This has nothing to do with fatigue.
2. “Those affected have to pull together more.”
The body lacks energy and not the will of willpower.
3. “Physical exercise helps.”
Physical exertion aggravates ME.
When manipulated studies do damage
Again and again, behavioral therapies and physical training are given as successful treatments. Recently, articles by journalist and health expert David Tuller attracted attention, revealing, along with other experts, how to trick the well-known PACE trial to ultimately falsely claim that physical training and talk therapy help with ME. In the meantime, other journalists and experts became aware of it and came to the conclusion after examination that the study contains massive errors.
Here, too, those concerned, with reference to this study, are forced, under threat of deletion of the financial basis of their livelihood, to undergo such therapy and to worsen their condition.
The worst part is the prejudices
The illness made me a bedridden nursing case. The worst part of the disease, however, are the prejudices of my fellow human beings, and that I always have to justify my bad condition.